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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Neuro symptoms...meds? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1332725627 Message started by Julie M. on 03/25/12 at 14:33:47

Title: Neuro symptoms...meds?
Post by Julie M. on 03/25/12 at 14:33:47

Hi all,

Has anyone had luck with a medication that helps MC related neuro symptoms. I'm in my second month of dealing with significant vertigo, headaches (though not as bad as the vertigo), blurry vision in my left eye and "pins/needles" in both hands and feet.

Dr. Afrin told me that he wasn't aware of any specific meds for neuro symptoms, and perhaps a MC stabilizer would help. I saw a neuro last week and he is reading the report from my appt. with Dr. Afrin and then plans on contacting Dr. Afrin for consultation. Hopefully, some good can come from that exchange of information.

In the meantime, has anyone had success reducing their neuro symptoms with a particular medicine?

Thanks,

Julie

Title: Re: Neuro symptoms...meds?
Post by Joan on 03/25/12 at 17:42:53

If the doctors rule out other possibilities, you might want to ask to be checked for vitamin deficiencies.

At least some of your symptoms (vertigo, headache, tingling) might be caused by a vitamin B12 deficiency, common among people with digestive problems and/or people who take certain other meds that can interfere with absorption. A simple blood test can show if you're deficient. Sublingual B12 or sometimes, injections are effective in treating deficiencies. Other low vitamin levels can cause other symptoms.

Title: Re: Neuro symptoms...meds?
Post by mikev on 03/26/12 at 02:28:10

Julie:
My SM is all neuro systems mainly skin pain & sensitivity as am true leaker with ckit mutation. When mine first started went to neuro docs with my age being in my 60's. But they couldn't find any neuro problems just something was interfering with my neuro system. Searched for years until found it was SM. My feet are worst but not tinging more pain. When was working with neuros, tried all kinds of tests & meds. Cymbalata was the best but worked for a short while then pain came back. Now on ketitofen for mast cell stabilzer,before was on gastrocrom. Also Tramadol & tylonel for pain. They just help to take the edge off but do help. I'm still not sure the H1-H2 protocal really does anything for my type of SM, but have contiued to do it. have they run the nerve conduction test on your feet?
Mike V

Title: Re: Neuro symptoms...meds?
Post by Julie M. on 03/26/12 at 09:18:05

Hey there Joan & Mike...thanks for your responses!

Joan - What you mentioned is absolutely what the neuro said as well. He ordered a B12 test and also a methylmalonic acid test. I remember that my B 12 has been low normal in the past, so maybe there is something there. I would be so happy if I could just take B12 shots and feel better! We'll see once the test results are back.

Mike - Goodness, I feel for you with all those neuro symptoms! I have had both EMGs and NCT in the past, but on my hands and arms, not on my feet. Tests always showed that I had carpal tunnel in both hands. This discomfort is far beyond the CTS pain, however. It involves pins/needles and discomfort/pain. I'm not sure if the neuro will go for the tests; I think he's waiting for the blood tests to come back first and then we'll go from there.

Sounds like you've found a combo of meds that at least takes the edge off the neuro symptoms. I'll keep that in mind if the symptoms persist and it turns out not to be a vitamin deficiency issue. Thanks for sharing your experience. Maybe something I need to consider down the road.

Thanks to you both. I'll keep you posted.

Julie

Title: Re: Neuro symptoms...meds?
Post by angelloz on 03/26/12 at 13:06:13

Mike,

May I ask if you have other neuro symptoms or is it all skin pain and sensitivity? Neuro pain is so hard to deal with.
Angelloz

Title: Re: Neuro symptoms...meds?
Post by iamnotalone on 03/26/12 at 14:30:09

Julie;
What is the "CTS pain" you mentioned ? I've had tingling, pins& needles, pain in my arms & hands for a while now. It wakes me up most nites and is usually there when i get up in the AM.
I'm going for an MRG on Friday. My GP mentioned carpal tunnel...
So then what- will I have to wear those wrist thingys ? I saw Ketotifen mentioned, but am already on it. I take sublingual B-12
everyday.
OOOH--- Never Mind-DUH ::) Carpel Tunnel Syndrome !!! Sorry- I'm a bit slower than my usual these days ::)
lori

Title: Re: Neuro symptoms...meds?
Post by Joan on 03/26/12 at 19:13:18

Hi Julie,

If you don't mind, please post what you find out about your symptoms. A number of people have written about similar symptoms at various times, and it's always helpful for others to know the possibilities.

It's really surprising how many symptoms can be caused by vitamin and/or mineral deficiencies. Hope it turns out to be something easy to resolve!

Title: Re: Neuro symptoms...meds?
Post by Julie M. on 03/27/12 at 05:50:49

Lori...no problem on the question about "CTS"! LOL, brain fog...a daily occurrence for me, so I understand!!

Yes, if you have CTS you are probably looking at wearing the "wristy things"/hand braces, which do help, but are a little bit of a hassle to wear. I generally wear them at night, because that is when the pain is at its' worse. It really helps with reducing the pain in the AM.

Joan - I will definitely update as things progress with my neurologist. One question; what are the vitamins, micronutrients, etc. that should be checked on a regular basis for MC patients? I was diagnosed with a malabsorption problem, so I would imagine there must be some areas where I'm deficient. Doctors don't seem particularly interested in checking these levels, but I'm going to see my PCP and ask her to check my levels, once I figure out what exactly she should check. Any suggestions on what all I should request on the lab work?

Thanks,

Julie

Title: Re: Neuro symptoms...meds?
Post by iamnotalone on 03/30/12 at 07:50:19

Yep;
After the emg- Dr. says most likely the wrist thingys at nite. Mentioned there are meds for pain, & if that doesnt help, then surgery. He was speaking generally. Im goin with the braces at nite for now. This dr. also does acupuncture. When I asked if there was any help for CTS w/that, he basically said insurance only covers it for a couple things, n people dont want to pay out've pocket. One more instance of it not being LUCRATIVE for them (health ins. co.s) yet they'll pay for drugs, rather than an alternative treatment ... :-?
good luck Julie :)
lori

Title: Re: Neuro symptoms...meds?
Post by Riverwn on 03/30/12 at 11:26:35

Pain sources and treatment for that pain is multiple and a mystery unto itself!!

I have connective tissue and long bone pain--from the Masto and also now from newly diagnosed Sjogrens Syndrome which also causes connective tissue pain. It is very common to have other auto immune diseases when you have masto and some of those diseases cause pain too. You cant always be sure which is causing the pain at that moment.

My connective tissue pain and long bone pain is usually in my lower spine, both hips and both knees. It can be VERY painful, where I cant move until I bring that pain level down. I frequently hear bones that "pop" or make a cracking noise and I think this pain is caused from inflammation because an infrequent dose of prednisone will make it MUCH better. I avoid that though, the side effect of Prednisone isnt worth it. I also have general body pain (I was diagnosed with Fibromyalgia in the past but it was before they found the Masto and Im thinking this pain is caused by the Masto).

I treat those types of pain with pain meds (which I usually tolerate ok, many people dont) AND now I add an extra antihistamines each time I take a pain med--I am convinced that higher histamine levels make my pain level much worse and the pain meds dont work very well until I bring those histamine levels down. Its working-- to my amazement, which makes me think I am under medicated with my antihistamines. I know Dr Castells is now prescribing meds every 6 hours saying that every 12 hours is not covering our need for antihistamines.. It seems she is right--- with my pain level at least and Im changing my med schedule this next week adding a midday dose of antihistamines.

The other type of pain is neuropathy . This pain is usually based on short circuiting and/or damaged nerves and it usually starts in the feet but may proceed to include upper extremities too. I definitely have this type of pain. To make the situation more confusing, the Sjogrens Syndrome also causes neuropathic type pain--add another cause in here--I am Diabetic and that can cause some pretty intense neuro pain.

So, I cant tell you which disease is causing my neuro pain at any particular moment BUT I can tell you what helps me. First.. as a Diabetic, I take my blood sugar and bring it down with insulin. I am convinced that sugar spikes make my feet hurt. Next I am on Neurontin (newly on it, this last month only). I get some pretty bad neuropathy pain... my feet started with pins and needles, add numbness, then it proceeded to feeling like I was walking on fire and I cant get off of it. That is HORRIBLE. Sometimes i stick my feet in a pan of ice water 1/2 inch deep and that helps but only momentarily. Since I started the Neurontin (Gabapentin, Lyrica low dose) I do get relief from it and when its particulalry bad, I add an extra dose of 300 mg Neurontin--which helps alot.

With pain levels, you have to be a detective to figure out which type of pain you are having to get a good idea of what to use to treat it. I hope some of my thoughts might help you feel better :)
Hugs
Ramona

Title: Re: Neuro symptoms...meds?
Post by Riverwn on 03/30/12 at 11:35:13

PS, I also use a heating pad on my lower spine and cold packs in any other hurting places--this helps too. Remember that heat increases circulation so it might make swelling worse. Use one and if it doesnt help, try the other!

Title: Re: Neuro symptoms...meds?
Post by Anaphylaxing on 03/30/12 at 12:11:35

neuro Sx were my first symptom. They have improved with the exception of right thumb numbness. They flare when I'm having a reaction

For me it's tingling and sometimes burning in my tongue, throat, extremities and sometimes whole body

Title: Re: Neuro symptoms...meds?
Post by Buster on 03/30/12 at 15:04:15

Julie,

Did your symptoms appear before or after you started taking medications?

Buster

Title: Re: Neuro symptoms...meds?
Post by Joan on 03/30/12 at 17:42:57

Julie,

Any vitamin that's absorbed from food or produced in the intestines can be deficient if there's dysfunction of the GI tract. That would include B vitamins and vitamin K. Some sources say that many vitamins are produced in the intestines, and others say only a few. I don't know which is true.

I would imagine the same to be true of minerals. Osteoporosis is common among mast cell patients. When there's malabsorption or other GI problem, bone health can be an issue, so vitamin D and K might be tested (in addition to B12). Vitamin D deficiency seems to be relatively common in mast cell patients.

If your doctor doesn't have any recommendations, I'd suggest looking into the symptoms of vitamin deficiencies, and go from there. So far, I've been tested only for D, K, and B12. I supplement vitamin C, B vitamins (other than niacin since it can cause mast cell degranulation) and minerals. I suppose it couldn't hurt to consult a nutritionist.

Title: Re: Neuro symptoms...meds?
Post by Julie M. on 04/03/12 at 14:44:39

Thanks Joan, good advice. I saw my PCP today and am having several things checked related to potential vitamin deficiencies. I'll report back once I get the results.

I've been diagnosed with osetopenia, so I'm already on that path. :(
Next bone density is in June, so we'll see if there's been any change.

I'm going to set up an appointment with a nutritionist after I get my lab work back, not only to deal with potential deficiencies in my diet but also to better identify food triggers.

Buster,

I'm not sure which medications you are referring to, but I've been on antihistamines since I was a child. Lots of allergies all my life so antihistamines have never posed a problem. I take a whole lot more now, that's true, but I seem to tolerate them just fine and don't suspect them as a culprit for the neuro symptoms. Good question to consider, however.

Julie

Title: Re: Neuro symptoms...meds?
Post by lynda51 on 04/03/12 at 17:26:23

Hi Julie,

I am no expert, but I was diagnosed with neurological problems BEFORE I was diagnosed with MCAD. They did an EEG after several days in the hospital (for what I now understand was a anaphylactic reaction). It was abnormal. Because I had no idea about the mast cell issues at that point, they put me on Keppra (a seizure drug). No one knows why, but it has helped my symptoms of dizziness and headaches a lot.

When I saw Dr. Afrin and he talked to me about my diagnosis of a "possible seizure disorder". He felt that it was a degranulation episode that was causing the headaches, blurred vision and pain and even possibly the abnormal EEG.. He felt getting the mast cell disease under control would help with the other symptoms.

Also, some of us with Orthostatic problems can have a narrower channel in our neck area that can cause pain and even decreased blood flow to our brain. I find when this type of combination of pain occurs as well as the visual problems, I seek out a physical therapist. My PT has taught me the use of "pressure points" that calm damaged nerve endings. You identify those "trigger" areas and apply pressure which relaxes the nerve endings, and thus reduces the pain to the tissue around it. It controls much of my pain without meds... I would not try this without the advice of a therapist knowledgeable in this. Otherwise you can cause more pain than what you would otherwise relieve.

Are you on cromolyn? (I have to admit that the cromolyn seems to aggravate my dizziness but if I drink it in small amounts then I don't have any problems). HOWEVER, it has been the cromolyn that has reduced my bone pain to almost zero (I only experience nasty bone pain now with a major degraulation)!! So it is worth it to me. Do YOU feel you are adequately medicated? Are you really careful with your diet as well? If I eat anything I shouldn't, the first symptom I experience is that awful dizziness!

I agree with Joan....a vitamin investigation is definitely warranted. I am glad to hear your doctor has started investigating this.

I also think Ramona made an excellent point....until those histamine levels come down, nothing can stop the kind of pain we experience. It's interesting that you mentioned a 6 hour dosing instead of 12. I am finding that when I dose more often it is much more effective. I always remember from chemo...they would always tell you "it's better to KEEP the pain under control than try to GET it under control" We tend NOT to medicate until we feel the pain instead of keeping ourselves on a regiment to AVOID the pain. Be good to yourself!

Keep us posted Julie and I wish you the best!

Hugs, Lynda

Title: Re: Neuro symptoms...meds?
Post by jbean on 04/06/12 at 03:22:16

I get this type of pain now and then. I think it could be a combination of medication side effects, as well as possibly the effects of mast cell mediators acting on the nervous system. I have found that over time it seems to come and go.

It really bothered me at first, but now it has subsided a lot. I don't get it much any more, mostly when things flare up a bit for me.

Title: Re: Neuro symptoms...meds?
Post by goldielove on 04/06/12 at 13:16:28

I had so many neuro problems at the beginning of this disease one of my first symptoms were tremors in my hands and then it developed in my feet horrible when I was trying too drive and very scarey, I also had involuntary jerking at night when I would try too go too sleep, I also had severe tremors in my head like my whole head was shaking now I rarely have any of these symptoms anymore, my only lasting symptom seems too be neuropathy in my feet not dx by an MD but by me I cannot go barefoot in my house on my tile I just feel so funny like I will lose my balance and I have no feeling in my feet I always have too have shoes on my feet unless I am upstairs on my carpet floor or in bed. I had a neurologist dx me PID when I was in my early stages of this disease he insisted I should go on IVIG wow I wonder what would have happened too my mast cell problem if I had listened to him and had a million peoples antibiodies crusing though my body wow can't even imagine I think your neurological symptoms should be checked out if all comes back neg it probl from the mast cells and will get better

Title: Re: Neuro symptoms...meds?
Post by WendyH on 05/23/12 at 08:28:36

Ramona,

I was reading your post about the long bone pains. I have gotten those severe pains that start in my hip bones then travel down the bones of my legs into my feet. Sometimes its so bad I can't walk. I also get alot of joint pain but since I have been on Cymbalta its better, not gone, but tolerable. I use to take Percocet for the pain but unfortunately I can't take it anymore since now it sets off the anaphylaxis even if I drink benedryl before hand. Some of my neuro symptoms, tingling, weird feelings in my muscles in my legs and vertigo have been helped by B12 injections. They found I had pernicious anemia from the SM, now I have to have B12 injections weekly for the rest of my life.

Wendy

Title: Re: Neuro symptoms...meds?
Post by Lisa on 05/23/12 at 12:40:26

goldielove wrote on 04/06/12 at 13:16:28:

Goldie, I don't think you are understanding how IVIG treatment could indeed have helped you. I'm not sure if you are understanding the processes correctly. Although it is not widely spoken about, I have heard that some of us who are autoimmune masto patients have indeed BENEFITTED from IVIG treatment. It's a valid option. I would most certainly try it if one of my doctors would only suggest it, for I think that it would give me some real help, but since my symptoms have calmed down a bit by introducing singulair, we're not feeling such pressure to trya the IVIG treatment. But I can't help but think that it may indeed be a good idea because my autoimmune side of this disease has a real, define role in my masto and my recent upper and lower GI has shown that the inflammation has increased since 2008! My esophagus was totally clear of inflammation then and now it's half way up the esophagus!!! My intestines show increased inflammation. If it continues in this way, I will be asking for this treatment for this is not a good sign.

Lisa

Title: Re: Neuro symptoms...meds?
Post by WendyH on 05/23/12 at 15:51:50

Ref the nerve problems we masto's seem to have, has anyone actually gotten thru the EEG (I think that's what the test is called where they stick a pin in you and set an electrical shock, I can't remember right now) but I was wondering because twice the docs have tried to do this with me and it sets off the anaphylaxis. I have no idea why because I didn't feel any pain. So both times it had to be stopped. So was wondering if that has happened to anyone else?

Wendy

Title: Re: Neuro symptoms...meds?
Post by mikev on 05/24/12 at 06:38:27

Wendy:
Yes I had 2 of them. The first when it was only my feet & they tested
just my legs. Not bad. 2nd one I was full systemic with my skin so
sensitive it hurt to touch much less put electricity through. When they
did on my arms which are now as close to sensitive as my my feet I almost blacked out the pain was so bad. I'm not sure how a shocker
would react, all I know is no pain I now have anywhere approaches the pain I had during that test. At one point the doc asked me if I wanted to stop & I said no, if it helps me find out what is wrong with me keep going with the test unless I black out, but I didn't. But test just came back with something was interfering with my nerves but
was not a neuro problem & I kept on my search from there.
MikeV

Title: Re: Neuro symptoms...meds?
Post by WendyH on 05/24/12 at 07:10:34

Mike, sorry it happened to you but glad that I am not the only one. My neuro at the time would not keep going either time the anaphylaxis had me shaking so badly. I have no idea why the test set it off since him sticking the pins in me didn't hurt but I guess nerves felt differently. That was my first shocker experience ever, I had no idea what it was at the time til the doc had to call in another doctor to find out what was going on with me. Several weeks later he tried again and same thing happened, oh well. He was very surprised too because before he decided on an EEG he had given me a spinal tap and that didn't set it off and that REALLY hurt.

wendy