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POTS, IC, CFS, and now Masto? Am new here. (Read 35725 times)
Kitt39
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POTS, IC, CFS, and now Masto? Am new here.
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
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DeborahW, Founder
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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #1 - 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! Smiley

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!!
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Kitt39
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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #2 - 12/31/12 at 05:57:42
 
DeborahW, Founder wrote 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! Smiley

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!!


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


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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #3 - 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.
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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #4 - 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 Smiley Youre gonna be fine, youre "home" now!
Hugs
Ramona

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Kitt39
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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #5 - 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






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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #6 - 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
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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #7 - 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.
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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #8 - 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
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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #9 - 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 Smiley

Remember to ask your DR about trying some generic Ditropan to help your IC--helps me quite a bit Smiley
Hugs,
Ramona
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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #10 - 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.
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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #11 - 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

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Reply #12 - 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.
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Re: POTS, IC, CFS, and now Masto? Am new here.
Reply #13 - 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
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Reply #14 - 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
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