| Mast Cell Disorders Forum | |
|
http://mastcelldisorders.wallack.us/yabb/YaBB.pl
General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> POTS, IC, CFS, and now Masto? Am new here. http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1356915989 Message started by Kitt39 on 12/30/12 at 13:06:29 |
|
|
Title: POTS, IC, CFS, and now Masto? Am new here. Post by Kitt39 on 12/30/12 at 13:06:29 Hi, I've been reading this forum for quite a while but haven't posted. Lots of knowledgeable people here! I've had CFS for decades, hyperadrenergic POTS, and interstitial cystitus. A renowed immunologist has strongly suggested I have mastocytosis, and I have an appt. with a masto specialist in Florida in mid January. Just wondering if anyone here has mastocytosis along with any of the other illnesses I've listed? Am trying not to self medicate with H1 and H2 blockers until I see the masto expert. Have been too sick to do participate in much since the holidays, as I'm am in a 'crash' right now, but am hoping for feedback from anyone here. (I have extreme facial flushing daily, am sensitive to high histamine foods, and the illnesses I listed have strong mast cell components.) Thank you to anyone who can provide feedback or suggestions. Am trying to put together a list of questions for the mast cell doctor, but I have reams of test results for him, so expect he'll have his own agenda. Guess I'm wondering if mast cell meds have helped anyone with masto or mca? Has anyone improved? Thank you in advance for any help you have! K |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 12/31/12 at 03:46:45 The forum gets really quiet during holidays, so make sure to check back later for responses to your question! I would respond, but have to run out to the stores for New Year's Eve supplies for the family! :) Can you list the meds you take, the dosage, and how often you take them for us? That will help us give you better responses. Daily meds are key to preventing mast cell symptoms if you have a disorder. The tricky part is figuring out which ones work best for YOU. Also, make sure to read my tips in the Start Here category. That will help get you started. Lastly, if you find my own intro story, that should give you motivation! I was sooooooooooooooo sick that I could barely walk at one point! Now, I am good!! |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Kitt39 on 12/31/12 at 05:57:42 DeborahW, Founder wrote on 12/31/12 at 03:46:45:
Thanks Deborah, I take lots of meds for other illnesses, but have tried to hold off on medicating myself with H1 and H2 blockers until I see the masto doctor at M.D. Anderson. Am concerned that if I'm self medicating it might throw off testing he'll do. Have bought a few different H1 blockers, and an H2 blocker but haven't been using them for reasons above. Have read of tramadol helping with mast cell issues, (don't understand yet why), and I do have a script for that for IC pain. My masto issues may have an auto immune aspect, as I have Hashimoto's and other issues that have a suspected auto immune basis. Am in a severe 'crash' after the holidays with POTS, CFS and I'm sure mast cells are an issue. My norepinephrine (adrenaline) is over 1400 which is off the charts, so I don't sleep for more than one hour or two at the most at night. So it's complicated. Usually a norepinephrine level that high indicatescan adrenal tumor, but in my case it's a very extreme case of hyperadrenergic POTS. Have always tried to 'attack' IC, CFS, and POTS without addressing the mast cells, (except by following a protocol of injecting myself with heparin sub-q for IC) Yes, it works, but finding a doctor who is knowledgeable about it is difficult. I could be self medicating with that, and as I write this, I think I might try 1 ml of heparin sub-cutaneaously just because I feel so lousy. I have a lot to learn about the mast cell aspect...The doctor at MD Anderson is supposed to be an expert. My immunologist is friends with Dr Theo at Tufts, and she's the one who suggested I have mastocytosis. Thank you, K |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 12/31/12 at 06:09:32 The mast cell specialists tell us to stay on our mast cell meds, including H1and H2 blockers during testing. They say it won't affect their results. It's up to you, though. If you aren't so ill and aren't shocking or barely functional, then it's not the end of the world to wait. If you are shocking, then that is a different story. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Riverwn on 12/31/12 at 07:08:26 Hi Kitt! I have a great deal of respect for the DR you are going to see. I havent seen him yet but I hope I will be soon (I had a problem with the admissions office, they wanted all my medical records before they gave me an appt so I had everything sent there--then they said "We didnt know who you were and we threw it away." I wasnt happy LOL..) Anyway, Im making a new appt soon. I agree with Deb and I would strongly suggest that you start taking some antihistamines now--to stop that reaction (face flushing and feeling so bad). Med-wise, it can be whatever you react best to--Zyrtec, Benadryl, Allegra, etc. and most of us take Zantac 300 mg twice a day--It is both an antihistamine and will help stop those tummy terrible signs youve been going through. Our DRs want us to stay on our meds and the tests are just fine ON our meds. Its important to not go off of them and go through what you are going through now. You also need to try some Oxybutynin (generic Ditropan) twice a day, for the IC. It sure changed my life and I hope it helps you too! I sent my number to you privately since you live very near to me. Call me if you need to talk :) Youre gonna be fine, youre "home" now! Hugs Ramona |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Kitt39 on 12/31/12 at 08:59:41 Thanks Deborah and Ramona, I appreciate the kind thoughts. Have so many 'things' going on, it's hard to know what's doing what. Hyperadrenergic Pots is really difficult to deal with. My extreme high noripinephrine level making it impossible to sleep, and the tachycardia and blood pressure swings are crazy. Plus nausea and light headedness. And the list is long. So with a little help, I'll give the H1 and H2 blockers a shot. I have Allegra, Zrytec, and benedryl. (Please forgive spelling errors!) Any ideas as to how best to use them would be great. (Only take benedryl at night to try and sleep.) POTS messes with cognitive function, and am having some difficulty navigating a new forum, so if anyone has a simple formula for H1 and H2 dosages, I'd be appreciative. Ramona, yes the doctor at M D Anderson is supposed to be amazing. I see him on January 10. I had to almost 'interview' for the appointment. Sent ALL records, but made the mistake of sending to him at M.D. Anderson, (and not his p. o. box at M. D Anderson) so it took a while for the huge 9 x 11 envelope to get to him. Cost over 2.00 to send an envelope 10 miles away. Ironically, (and I realize this is for Ramona's benefit,) but his staff is so unfamiliar with Masto they almost didn't respond to me. He's an oncologist and hematologist but also a mast cell expert. I had to explain to his staff that 'He really does specialize in this, and that no, I'm not a cancer patient. So keep at it Ramona. I agree, I think he's going to be well worth seeing! (I have very extensive testing already done by an immunologist who has a two year wait to see, and her reams of immune testing looks like Greek to most doctors), but this doctor will actually be able to understand it. A great relief to me. Have been in a serious 'crash' since Christmas, with CFS and POTS. The IC is 'behaving' but only after I've done a great deal of work to get it in check. Thank you Deborah and Ramona for the welcome, and any advice as to how to best take the H1 and H2 blockers would be welcome. Good to know it won't mess up the mast cell testing! Do you have many POTS, CFS and IC patients here. I've done some reading, but as I said am in a crash and have some cognitive problems especially when I'm in this state. I have a LOT to learn about masto and mca..So am glad I found you. Am HOPING I don't have masto but mca instead. Time will tell. Thank you again! K |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 12/31/12 at 09:45:40 Hi Kitt... there are several folks here with POTS, including myself. The high norepinephrine is very familiar to me. Mine was 1001 at last testing. I have been medicating about 2 years for Mast Cells, and 30 or so for POTS. My best medicine for sleeping is Hydroxyzine, one of the older antihistamines. I don't take it during the day as it is too sedating, but take 1-2 25 mg pills at bedtime. Hang on! You feel better once you get some things sorted out. Gail |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Futurehope on 12/31/12 at 14:44:11 FWIW, I have POTS, IC, chronic fatigue (though not officially diagnosed, but chronically fatigued), and MCAS. Not fun. I am working on a daily regimen. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Riverwn on 12/31/12 at 14:48:14 As far as POTS, CFS and IC patients --yes, we have quite a few people with those problems here. They are very often seen with abnormal mast cell diagnosis and if you look up more of Dr Theos work, he talks about why it is true. I myself have all of those but CFS--we have a debilitating exhaustion that resembles CFS but isnt. I have POTS and IC too. Oh joy, LOL. As far as what meds to take and when--only a DR can tell you that. We can tell you what we take but use that info in a talk with your DR and stay in touch with them so they know whats going on with you. (Maybe call the immunologist and talk about what you should try). The good thing is, most Masto meds are over-the-counter. You already have Benadryl--you can try it a few times a day. I started on Zyrtec two times a day and Allegra, once a day. I think 300 mg Zantac is an important med, twice a day. Most of us have tummies totally out of control when we first start meds--you need to bring it under control pretty quickly. You might need Prilosec (Omiprazole) (which is a proton pump inhibitor--that means it stops a lot of that acid) if your tummy has a lot of indigestion. Take these meds routinely--around the clock, not just if you need it--or you will be playing catch up all the time. You will have routine meds and "rescue" meds--meds that you only take when your regular ones dont do the job for some reason. Remember to stay out of hot weather, hot sunshine. no exertion like running, take time to sit more often and dont walk for long distances until you are sure of what your limitations are--exercising can throw you into reacting and even into shock in some circumstances. Keep those nerves calm, get as much sleep as possible. Once you start some meds routinely, you will feel better, very quickly. Then, whenever you feel "flushed" or your tummy acts up, or you feel bad you know that you are reacting again and it is time to take your "rescue" antihistamine to bring your body back under your control. Masto patients have to take many more antihistamines than usual people do, dont let that scare you--our bodies need it, to stop reacting. There is so very much you need to learn, much you have to start doing and even more to read. One step at a time and dont let this all overwhelm you. Welcome to the Masto Muskateers LOL. Get some sleep and start tackling all this tomorrow! Hugs, Ramona |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Riverwn on 12/31/12 at 14:56:36 To Kitt: Gail is right--that "brain fog" can be pretty wearing--I surfed NIH websites and found they were using Vistaril (Hydroxyzine), to help cognitive function. Mast cells are in the brain and their job is to facilitate communication between cells. When we are reacting, those cells "short circuit" and we get "foggy". I now take Vistaril (Hydroxyzine) 25 mg twice a day and it sure helps me :) Remember to ask your DR about trying some generic Ditropan to help your IC--helps me quite a bit :) Hugs, Ramona |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 01/01/13 at 03:37:23 Here is what I take. I consider it kind of like "the starter pack" of meds. Dr Akin put me on this and it worked so well for me that I have never had to add any. 8 am (or whenever you get up) 150 mg Zantac (I used to take 300 mg, but my symptoms improved) 180 mg Allegra 4 pm (some take it a little later before dinner) 150 mg Zantac (originally 300 mg) 10 mg Zyrtec If I flare before 4 pm, I take an extra Zyrtec. If I flare after 4pm but before morning, I take an extra Allegra. If I continue to flare, I take 10 mg Singulair (prescription anti leukotrine med). If I am starting to shock and these meds haven't stopped it, I take 10 mg Hydroxyzine. The Hydroxyzine knocks me out and I feel like I have a hangover the next day. So I try everything to avoid it, however if I have to, I will take it because it stops my shocking instantly!! It it was me, here is what I would try: I would buy some Zantac, Allegra, and Zyrtec. Then try a Zantac and an Allegra in the morning. See how you feel. If you are fine (which you should be. Rarely do they bother anyone), you could take the same that night. Do this for a few days. A few mornings later, take a Zyrtec in place of the Allegra. (I prefer to try new meds in the morning so I can better observe how I feel from them.) If you are feeling fine, that evening take Zantac and Allegra. Then the next morning finally switch to Zantac and Allegra in the morning and Zantac and Zyrtec in the evening/late afternoon. Just make sure you are taking it before dinner so it has time to prevent food symptoms. These are the basic meds. After that you could tinker with your doc to change anything if you need more improvement. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Kitt39 on 01/01/13 at 05:20:10 Thank you for the good suggestions. Vistaril is by prescription only or is there an over the counter option? Good information on dosing with the H1 and H2. I have Allegra and Zrytec on hand and tried one of each today. I don't have Zantac, but am not sure if I need it? Thought that most of the nausea I have is due to high heart rate, but I'll get some next time I'm at the drug store and see if it helps with nausea. Am only using Benedryl at night because of the sedative effects. Sometime in the last six months I read a disturbing article in the New York Times about Benedryl and Alzheimers. Seems there's a connection. You can Google it, but here's a brief description. http://www.healthcentral.com/alzheimers/news-290406-98.html Thank you for the good ideas about dosing! Being fatigued like one is with POTS and other chronic illness is difficult. CFS is a neuro immune disease though. (Want to share what I can.) It's not just about exhaustion, I think we all have that with chronic illness. CFS has profound neurologic and immunologic biomarkers in addition to the fatigue. Fortunately a lot has (finally) been learned about it in the last several decades. Do the H1 and H2 blockers help with foods that are high in histamine and tyrosine? Can you be more flexible with your diet with the anti-histamines? Thank you again, K |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 01/01/13 at 06:08:04 Zantac or Pepcid help target GI problems from mast cells degranulating. However the Zyrtec and Allegra seem to help halt GI issues for me as well. Thus the reason we take both. If you are all flared up, the goal is to get your mast cells in a calm stable mode. That can take a while, but with the meds, avoiding triggers, and adapting your lifestyle (perhaps by getting a lot of rest and relaxation right now), eventually you should be able to eat more variety. There are certain foods which I will never eat because even with meds, they just trigger me terribly. No big deal. I find that I naturally have changed from liking those foods to disliking them. Maybe it's nature's way of giving me a self defense mechanism for something that could kill me. Who knows. Sometimes by getting the mast cells under control, your other medical conditions may actually get better because they are aggravated by the mast cells. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/01/13 at 10:58:21 Kitt... I think Hydroxyzine is prescription only. Maybe Ramona knows for sure. Thanks for the info on Benadryl. I know some people who will be interested in that. Some test results will be helpful in determining which meds will help. I, for instance, don't have high levels of Histamine and cannot take the higher doses of antihistamines. Whether or not that is due to the Clonidine I take for the NE or not is a big question for me. Ramona... do you know if Dr Theo has addressed the high norepinephrine specifically? I have read some of his work, but have not seen anything about NE. I am trying to make a connection. Gail |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Kitt39 on 01/01/13 at 12:27:16 Hi Gail, I take Clonodine too, but am new to it with the .1 patch. Not sure if it's going to work well or not. Have been exhausted beyond compare since starting it, and don't know if it's due to a post-holiday crash or it or a combination of both. How long have you been taking it Gail, and has it helped with tachycardia, fatigue, or? Do you take Clonodine for high NE, for tachycardia, or POTS? Not sure how much it helps with high NE? Am having huge sleep issues due to the high adrenaline (high NE) levels also. Crazy combination going on. How do you address high NE, with meds or what do you use? I only sleep one or two hours at a time at night and then wake up like a bolt of lightening...Wide awake. Am very familiar with Dr. Theo's work. He's a hero to CFS patients. But am unaware of anything he's said about high NE? Would like to read anything he's written regarding that. I was/am very bothered by the information about Benedryl and Alzheimers also. The link I posted did not come through as 'hot' but if someone Googles Benedryl and Alzheimers they'll see lots of information. Am so confused right now as to what symptoms are which. Not sure what symptoms anti-histamines should be relieving? Sounds 'stupid' because I've had CFS, IC for decades, and POTS for a year and a half but still not sure what issues I can relieve with anti-histamines. Mostly fatigue is what's keeping me from functioning right now. Balancing a slew of chronic illnesses is convoluted. It's hard to know what's causing what. In theory it's the 'hip bone connected to the thigh bone' but in reality it's incredibly complex! Thanking all for helping! Am very appreciative. K |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/01/13 at 15:30:27 Kitt, I take Clonidine for Hyperadenergic POTS, and have for years. It helps with all POTS Symptoms for me. It tricks the brain in to believing we have more than enough Catecholamines available, and so production is reduced. Using Vanderbilt's concept of what is happening with H. POTS, this indicates that Mast Cell activity would also be reduced, since Neuropeptide Y, which is released with NE and activates Mast Cells, is also reduced. Do you also have high BP? If not, the 0.1 mg dosage may be too much. It seems to be a powerful little drug. I started on 1/2 of the 0.1 mg tablet, and that is what I am still taking. Clonidine is known to cause fatigue, but generally a person adjusts. You are where I was about 2 years ago, except that I have had POTS symptoms as long as I can remember. Yes, it is difficult to know which symptom belongs to which medical problem. I am almost to the point of saying it is all an Immune System imbalance, but can't just yet. Regarding sleep, NE's role, in part, is to make a person alert. Of course this doesn't work well when we need to sleep. But we also have a natural 'dump' of Histamine during the night. "Pharmacological data also support an arousing role of histamine. Various experiments impairing or blocking the transmission of histamine all increase cortical slow activity and deep slow wave sleep, whereas enhancements of histaminergic activity promote wakefulness (6,7)." http://sommeil.univ-lyon1.fr/articles/lin/frenchcorner/sommaire.php With the right meds, you will be able to quieten things down though. Hang in there. Gail |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Kitt39 on 01/01/13 at 15:57:53 Gail, Thanks for your response. I started the .1 Clonodine patch less than a week ago, after being on half of a .1 pill for many weeks. Thought it was time to titrate upwards. I don't know about masto patients, (though would like to), but CFS and POTS patients have a 'less is more' reaction to medications. Tend to be overly sensitive, so perhaps .1 of Clonodine is too much too soon. I did NOT know Clondodine affected NE, (adrenaline) as you stated. Had no idea about that. Was using it strictly for the hyper pots, as beta blockers caused by BP to go to 80 over 40...Too low. Also beta blockers cause mast cells to degranulate, so it's a NO with hyper pots. Have always had very low BP, but now it's all over the map. Even the cardiologist's nurses are amazed by it. Jumps all over depending on if I'm sitting, standing or supine. Also, did NOT know histimime causes 'arousal..Will Google on that, it's good news. Yes, am not sure what's doing what right now, but tomorrow morning I will take another dose of Allegra and Zrytec, and see how it goes. Am appreciative for that information. Thanks to all. Hoping to contribute at some point, and not just need. Best! K |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 01/01/13 at 17:21:13 I wouldn't worry that much about benedryl. First of all, for mast cell people benedryl is to be used as a rescue med, not a daily preventative. The other meds can do the job just fine, even as a rescue med. I cannot take benedryl, as it gives me a full body rash. Yet, my anaphylaxis is pretty non existant now due to the other meds. So you see, you can get the same good effect from other meds. It doesn't need to be benedryl. Also, if you have mast cell disease there really aren't any tests that will tell you which histamine blockers, such as Zantac will work better than others, like Zyrtec, for example. You simply find out through trial and error. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/01/13 at 18:38:30 Deborah, you are absolutely correct about test results not telling which antihistamine will work better. But, for me, since my test results showed normal Histamine levels, then I wasn't surprised when I was was unable to take the larger doses. Kitt, ppl new to dealing with something are expected to be needy. Please don't be concerned about that. My BP was always on the low side also until I had a medical procedure. Then it went very high. When I got things settled down a bit, my BP also settled. It is now always in the normal range. This forum is the best one for Mast Cell problems, I think. You have found a good place to learn. Gail |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by BlueSkies on 01/02/13 at 03:05:33 Hi Gail, I'm new to the forum, and still a real newbie learning about masto. I was diagnosed a year ago with TMEP masto. I just saw a Dr. familiar with masto recently, and he started me on very low dosages of Zyrtec & Zantac. I couldn't take the Zyrtec, but the Zantac may be helping a little. (I'm taking 1/2 of a 75mg at night - I am sleeping better.) I have CFS, and a history of only tolerating small amounts of meds - if able to tolerate at all! I'm expecting a phone call from the Dr. any day now with my histamine & cortisol results. After reading what you wrote on this thread, and considering that I don't get typical allergy reactions (like a runny nose), but get masto type reactions - like exhaustion, brain fog, skin burning, and more spots, then I'm thinking my histamine results may turn out normal or only slightly elevated. The Dr. is using the histamine test to help determine if my TMEP masto has gone systemic. Do you have systemic masto? Can you have systemic masto if the histamine results are close to normal? I sure have whole body reactions (stomach, brain, in addition to the skin) to my triggers, which makes me suspect systemic. (I want to be prepared with some good questions for him.) Kitt, I appreciate your comment about CFS patients also tend to need small amounts of meds. That is so true of me. I would like to learn more about what you know about CFS - but I will start a thread on it later in the new non-mast cell diseases section (too tired right now, LOL.) Many thanks! BlueSkies |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Kitt39 on 01/02/13 at 05:31:44 Thanks for the input. Am thinking right now I need to get the data to determine if I have masto or mca. Here's a good link that talks about the two. http://stoppotsvirginia.blogspot.com/2012/07/find-your-pots-cause-wide-world-of-mast.html?showComment=1357095111361&m=1 I have bone pain, and issues that aren't going to be helped by anti-histimines, and I'm not sure if the nausea I'm experiencing is due to mast cell issues or pots? I've read about Tramadol helping pots issues, and don't understand the mechanism, as pots is not really a 'pain' issue. People who are using it for pots are not using it for pain, but there's some mechanism that helps. I've also read about Tramadol being used for mca and masto. Does anyone know anything about it, or is just used for pain? My biggest issue is sleep, and as I've mentioned it's not helped by sleeping pills or any other pills I'm aware of. My understanding is that the sleep disturbance is due to the high adrenaline, due to hyperadrenergic pots...Adrenaline is produced by the adrenal glands, so still don't quite see how any of that can be quieted by anthistamines. Gail the explanation you gave about histamines at night was helpful, and that Clonodine helps that. Do you have a link to this data that Vanderbuilt has published? Am very familiar with the work of Dr. Raj there, and the work of the Mayo doctors, (Have you seen their brand new paper on pots?) Outstanding. As well as Dr. B Grubb's papers. Have not seen anything from Vandy about Clonodine having this impact on Neuropeptide Y, though I keep reading about Neuropeptide Y, and see it in the 'loop' when I look at mast cell diagrams. So am hoping the mast cell doctor can do explicit testing and clear up a few things. Have most people on the forum gone to a mast cell specialist? Do you feel it helped? Sounds like I bought Allegra last month thinking it was an H2 blocker, (to add to Zyrtec) realize now that I need to add Zantac to the mix! Thank you for clearing that up. Maybe if I get that combination right, I'll do better! Thanks again. Good luck to Blueskies. Hope you get good results. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Starflower on 01/02/13 at 06:00:47 Adrenaline is your body's natural way of balancing histamine release. Epinephrine (the synthetic version of adrenaline) is the only thing guaranteed to stop a severe allergic reaction. So... will antihistamines reduce your adrenaline level? I can't say for sure (I'm not a medical doctor), but I don't think it's unrealistic to think that if your body is not working so hard to counteract histamine release, then it won't have to produce so much adrenaline. Tramadol is used by some mast cell patients as a safe pain medication (since aspirin and NSAIDs are generally not safe). It doesn't treat the mast cell disorder itself, just related... or even unrelated... pain. Heather |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 01/02/13 at 06:06:58 Kitt, please let me know where the link that you posted came from. Such specific medical informatin needs to be verified before I can allow it to stay on the forum. It might be a wonderful source of info, I just need to make sure of its source and factual content in order to protect those of you just learning about mast cell disease from any errors that might be written. Thank you!! |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/02/13 at 06:27:03 BlueSkies... my exact diagnosis is still in question. I don't have the high Histamine levels, but do have high Tryptase... about 3x the upper end of normal range. However, I don't seem to have the other findings needed for Systemic Masto. I have a diagnosis of Probable Mastocytosis and another of Mast Cell Disease. I am fine with either at this point as I am being medicated and Drs are aware I need to be watched. I'm sorry, but I can't answer your question about Histamine and Systemic Masto. I do know that elevated Histamine is not one of the criteria for diagnosis, tho. I don't have many allergies or skin issues, which has made getting a diagnosis more difficult. Kitt.. NPY is mentioned in the POTS/Mast Cell Paper done at Vandy, although it doesn't give an extensive explanation of its action. Link: http://hyper.ahajournals.org/content/45/3/385.full NPY is co-released with NE. If anything reduces NE output, then NPY should also be reduced. If you have several symptoms, however, it probably is not best to rely solely on Clonidine for medication. I have been taking Clonidine for a long time, and my NE is still high. It just helps. Yes, see a specialist if you can. They can help guide you, although I have done lots on my own. Sorry I can't help with Tramadol. Gail |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Kitt39 on 01/02/13 at 09:35:39 Gail, that's a great paper, I'm surprised I hadn't read it. Am going to print it out and share with my cardiologist. I reread the part about Neuropeptide Y (NPY), and at the end of the paragraph they say 'Therefore, the physiological significance of NPY-mediated MCA remains speculative.' Maybe that's why I've not seen reference to it in other papers. Not everyone is willing to speculate. Think it would be more interesting if they did. Do you want me to email you the link to Mayo's new paper? But it's a great paper! What I found most interesting is this comment about hyperpots patients: In our experience, a therapeutic trial with α-methyldopa should be considered, given the evidence of a hyperadrenergic state. Have you heard of or tried methyldopa? Pretty wild drug, and the first I've seen mention of it in any paper! I realize now that I've not given the anti-histimines a good trial. Mentioned I bought Allegra thinking it was an H-2, (Major brain fog day), and need to get Zantac asap. Don't know why some use Zantac and some use Pepcid? Any thoughts? Am going to go by the pharmacy this evening and start taking per Deborah's 'recipe'. Deborah, do you want me to send the link to you in a pm? I found it on Dinet. Thank you again, K |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by BlueSkies on 01/02/13 at 10:30:22 Gail, thank you for your feedback. BTW, I should have said I'm getting tested for Tryptase, instead of for histamine. If I understood the dr's explanation correctly - Tryptase is a marker left behind by histamine, and is easier to test for than histamine. So, high Tryptase levels would indicate high histamine levels. Maybe that has some application to your test results?? And thank you Kitt for your well wishes. I hope your appointment goes well with the mast specialist! Be sure to check out Deborah's tips on questions to ask your specialist. They're under the "Start here" category that she mentioned to you earlier. I took those to my appointment and they were a big help. BlueSkies |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 01/02/13 at 10:43:54 I have to input here, as this is important: Even if your tryptase levels are normal, you can have mast cell disease, such as MCAS. The same meds as used for Masto are used for this. So, it is extremely important to try those meds if you have mast cell disease and want to feel better. If you respond well, then that is an indication that you could have MCAS, because that is often a diagnosis of exclusion. This means that you test negative to everything else, yet still have Masto symptoms. When you try the histamine blocker meds and they work, then you are on the right path toward feeling better. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/02/13 at 11:38:12 Heather, I think your reasoning is sound. However, I personally do not have high Histamine levels, but still have high levels of NE. Blueskies, see my response to Heather. If high Tryptase always indicates High Histamine, then I am a very rare person because I don't have high Histamine. The point I am trying to make is that these issues are not easily explained at times, especially if we don't fit a certain profile. Please read Deborah's post. Kitt, I would love to have that paper. Thanks for offering. I have tried Methyldopa. The people at Vandy seem to prefer that to Clonidine. I didn't do well on it however. I took Pepcid and Claritin until just recently. Since my Histamine isn't high, I am assuming that is the reason I could not take the Z&Z combo that is more common. But I obviously needed something for awhile. Gail |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by BlueSkies on 01/02/13 at 11:46:15 Deborah, thanks. I appreciate that! Especially since I still don't have my results back. I just started on the Zantac a few days ago, and my family has been commenting on the difference in my mood (much better!) and my improved energy. Some of my other symptoms have not changed, yet. But I am only just getting started working with the meds. I did not expect the mood or energy improvements. :) Thanks, BlueSkies |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by BlueSkies on 01/02/13 at 12:11:09 Hi Gail, I think your post went up while I was typing my reply to Deborah. I certainly did not mean to imply that you or anyone else might not have masto or mcas based on your test results - If it sounded like that I sure do apologize. It's also possible that I did not entirely understand what my dr was explaining about the relationship between tryptase and histamine, I am very new at all of this. And thank you for all your explanations, they are very helpful to me! |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/02/13 at 13:30:17 No problem BlueSkies. I didn't take your post that way. High Tryptase is rarely questioned. Mast Cell Disease is so poorly understood that you Dr may well believe what you wrote. Just know that there are exception. The Dr that first tested my Tryptase really didn't want to because I didn't have a skin problem. There are exceptions! I hope what I share helps. It can be so confusing trying to understand what is what. : ) Gail |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 01/02/13 at 14:17:01 MGC wrote on 01/02/13 at 11:38:12:
That would not be the reason that you weren't advised to take Zantac and Zyrtec. Tryptase and histamine levels have nothing to do with taking histamine blockers. It is the symptoms that dictate it. Those with low and normal levels take this combo as well. In your case, Gail, your doctor must have other reasons. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/02/13 at 14:32:16 : ) Deborah. Honestly, my Dr had nothing to do with the decision. I did what I thought best, based upon my own reactions. Gail Revised: Deborah, why would one take antihistamines other than for high Histamine levels? Inquiring minds want to know. : ) |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 01/02/13 at 15:12:52 I am happy to answer your question, Gail. Those of us with MCAS or Idiopathic Anaphylaxis, for example, usually have completely normal histamine/tryptase levels. Yet, we can be extremely ill, shocking, and even be debillitated and unable to barely walk. That describes me before I was diagnosed and put on meds. Those who have Masto either have mutated mast cells or way too many mast cells. Those with MCAS or IA react like the Masto people, but our mast cells are normal in shape and number. They just seem to be way too sensitive for some unknown reason and thus we shock and are just as ill as Masto people. The docs test us and all of our levels are normal. Yet we are oh so sick with Masto symptoms. So, the docs (I am referring to the main Masto researchers) put us on the same meds that they put the Masto people on. Everyone reacts to a different combination of meds best, because what would the fun in it be if it was easy? ;) So, they generally start all of us with some combination of Zantac, Zyrtec, and/or Allegra, and they then start tinkering by adding others such as Singulair, Gastrocrom, Hydroxyzine, etc. The doctors use their own knowledge to design a combo that works best for their individual patient since we all respond differently to the various meds. Some people respond better to Zantac, while others do better with Pepcid. Some use both Allegra and Zyrtec and others use just one of those. Some use high doses of Hydroxyzine and others use tiny doses. It all depends upon finding the right combo with the help of the doctor. All of these are based on the symptoms and the responses, however, not the tryptase levels since we IA or MCAS patients have great normallevels....we are just really sick without those meds, though. I hope this helps explain it a bit. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/02/13 at 15:31:59 Deborah, I have been reading your Forum for some time, even back to Lefora, and so I am aware of the differences... Masto, IA, MCAS, etc. What I did not realize is that someone would take, or even be able to take, lots of antihistamines without having elevated Histamine. Intersting! But what do the Antihistamines do if there is no/little Histamine? Thanks for the explanation. Gail |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Starflower on 01/02/13 at 15:53:28 It took me a while to wrap my head around this... but there is no direct relationship between tryptase and histamine. Some people with SM have few symptoms. Some don't even need to take medications on a daily basis. On the other hand, we've seen plenty of people on this forum with "normal" tryptase suffering from disabling symptoms. I was one of them. So was Deb. I don't know if my histamine level is "normal" or not. I don't think it really matters. It wouldn't change my diagnosis or treatment plan. A high tryptase level tells a good doctor that s/he should check your bone marrow for mastocytosis... it's not a guarantee that anything abnormal will turn up. The opposite is also true. You could test negative for every indicator it's possible to test for... histamine, prostaglandins, tryptase, etc... and still have a mast cell disorder. Historically, that's how people got a diagnosis of IA... because they were going into anaphylaxis, but no lab tests could explain why. Antihistamines still work though. That's an important criteria for figuring out if you have a mast cell disorder or not. One last point to consider... mast cells can partially degranulate. They don't always release everything at once. That's why you might have a normal tryptase level, but an abnormal histamine level... or vice versa. Symptoms experienced by mast cell patients can vary quite a bit from one person to the next. Fun, eh? Heather |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Starflower on 01/02/13 at 16:00:34 ps - Antihistamines don't get rid of histamine. They just block your histamine receptors so you don't suffer from the effects. Unfortunately, it doesn't matter what your histamine level is if your trigger-happy cells overreact to it ;) Heather |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/02/13 at 16:02:22 Hey Heather. Yes, I've got the no direct link between Tryptase and Histamine, partly because I have high Tryptase, low Histamine. But I have read some on partial degranulation (am I using the correct term?) and selective release of mediators. Oh yeah, lots of fun! : ) Still trying to figure things out...... |
|
Title: Benadryl/Alzheimers Post by Joan on 01/02/13 at 16:42:29 Sometime in the last six months I read a disturbing article in the New York Times about Benedryl and Alzheimers. Seems there's a connection. (Will someone please tell me how to get a quote to show up with a gray highlight?) Kitt, I saw a blog in the NY Times about this subject and read the summary you posted. I also went to the links about the study. Be very careful about posting a statement that asserts something like a connection between Benadryl and Alzheimers without reading and posting the original study or the facts of the study. This type of statement can unnecessarily scare people who need Benadryl for a rescue medicine. From what I read, the study found that elderly patients who had been in ICU, had a higher probability of having cognitive problems if they were taking multiple anticholinergics. (The first generation antihistamines, like Benadryl and Atarax are anticholinergics.) They did NOT know whether this was a short-term or long-term effect and did not blame Benadryl alone. The study I read was published several years ago, and as far as I know has not been repeated or confirmed. There are many "news" sources in which facts are not accurately or thoroughly reported, and many individual studies that make assertions that may never be proven. It makes good press, but not always good science. The ultimate recommendation was for people to be careful about taking multiple anticholinergic medicines at once, but I didn't see any warning about Alzheimers or any recommendation to avoid Benadryl specifically, especially if there is a serious condition that needs to be treated with it. If there's something I didn't find, please post a link. In the meantime, if anyone has fears about this issue, and/or if you are taking a number of anticholinergics, do discuss it with your doctors. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/02/13 at 17:11:03 Heather, I missed your PS Post. I do understand that antihistamines just block receptors. Interesting thought about Mast Cells overreacting to Histamine. Do you have a link to any info on this? Thanks, Gail. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Kitt39 on 01/02/13 at 18:05:25 Joan, I read a lot of New York Times newspapers, and while I can't post that article, (it was not the blog you Googled), here's an article about Benadryl and other drugs and their impact on cognitive impairment and relationship to Alzheimer's.http://health.usnews.com/health-news/family-health/sleep/articles/2009/06/04/some-otc-sleep-cold-meds-could-harm-aging-brain And another... http://www.healthcentral.com/alzheimers/news-290406-98.html I am very careful about statements, and people can certainly Google this information. There are many references to this on the internet. In addition I asked my pharmacist about it after reading the NYT's article, and he was aware of the issue and said to stay away from Benadryl, but the other anti-histamines were safe. In addition Dr. Oz did a segment on this topic, and while I can't find the original segment online, there are many posts with people talking about it who saw the show. It was specifically about Benedryl and Alzheimer's research. I can't speak to that, because I didn't see it. This is a legitimate topic of concern. People can read about it and make their own decisions about which anti-histimines to use. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Starflower on 01/02/13 at 18:06:52 Think about this scenario: two people have normal lab tests, only one goes into anaphylaxis at the drop of the hat and the other does not. Most people fit into the second category... even the rest of my family. I'm in the first category. Why? This is what the researchers are trying to figure out. I have the DVDs for one of the TMS conferences (2010, I think) and I heard Dr. Theoharides ask this exact question. TMS also describes trigger-happy mast cells in MCAS patients... Quote:
This is where the "A" in MCAS comes from. Heather |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/02/13 at 19:10:22 Thanks Starflower. I do know about hyper-reactive MCs, though. What I was wondering about is if you knew of any information regarding MCs being hyper-reactive to Histamine specifically, as I was wondering why one would take Antihistamines if one's Histamine was low. Gail.. night all |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Joan on 01/02/13 at 19:35:46 There seem to be 2 different topics here, so I'm going to start a new thread about the Benadryl/Alzheimers topic. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 01/03/13 at 02:56:00 I would say that the why take antihistamine question has been answered multiple times already here. Let's move on from that discussion, please, and allow the original poster to have her thread back. Thank you, Deborah, Forum Founder |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by MGC on 01/03/13 at 07:14:11 Debrorah, I do apologize if my questions were not specific enough, but in all fairness my questions were not just about why one would take antihistamines. If folks here cannot answer the questions, that is fine. I do understand that there are no physicians here. And if the answer is just that the antihistamines help ppl feel better, and the reason is not known, that is fine too. It happens in medicine from what I understand. I ask questions. It is one way I expand my knowledge of anything. Gail |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Kitt39 on 01/03/13 at 13:10:51 I appreciate Gail's input. Don't believe anyone here has a medical degree, and I understand many of you have been reviewing this information for a long time, but Gail's questions seem reasonable and intelligent to me. Participation in a forum isn't about making someone feel wrong in expressing a question or opinion? This particular forum strikes me as a wealth of knowledge and understanding, but if all I needed was a tryptase test and plasma histamine test and maybe a BMB then theoretically I could treat myself without a doctor by simply reading this forum? If so, I wouldn't be going to see a masto specialist at M D Anderson. Don't think it's all that simple or 'one size fits all'... Thank you for All opinions and not just the ones that are 'on topic'. K |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by Futurehope on 01/03/13 at 14:28:43 This thread has me totally confused?! Us MCAS people need antihistamines even though we may not show high histamine levels in our testing.......and the reason is ........?????? 1) Our mast cells are over-reacting to the histamine we do have??? OR 2) We don't know why, but we respond well to antihistamines??? Which is it, 1 or 2 or both? Do we know why us MCAS people respond to antihistamine meds? Actually, I don't really care why we respond to antihistamines, but I am glad something is of use in treating us. |
|
Title: Re: POTS, IC, CFS, and now Masto? Am new here. Post by DeborahW, Founder on 01/03/13 at 16:16:30 Kitt, Actually you are incorrect. We do have forum members with MDs, and even some actual mast cell researchers are members of this forum. Occasionally, we actually see a response or two from them. You are correct in that participation in a forum is not about feeling wrong for asking the question. However, asking the question multiple times and receiving multiple responses from knowledgeable people is redundant and not necessary on the forum. If one is further confused about something after multiple answers, it is better to private message the person and take the discussion to that level. This thread has now exhausted itself and is being locked to new comments. Should you need to further discuss this, please feel free to private message me. |
|
Mast Cell Disorders Forum » Powered by YaBB 2.3.1! YaBB © 2000-2009. All Rights Reserved. |