Dysautonomia And Other Diagnosis

[Elenapap11]

One more poll for the members of the forum.Thank you once again for taking the time to vote.

[Kellysavedbygrace]

None. All my issues are Dysautonomia related. I do suspect Mast Cell Syndrome but has not be Dx yet. I have lots of other diagnoses but all related. (fibro, sleep apnea, migraines, tinnitus, etc.)

[peregrine]

I didn't check EDS, since my condition (joint hypermobility syndrome) is - depending who you ask - either indistinguishable from EDS or is a different thing entirely. I haven't been formally diagnosed with IBS, but it seems very likely that I have it given symptoms (I just haven't gone for a diagnosis because treating it at home with a decently fiberful diet and the other at-home things I do for all of my chronic conditions helps).

[bellgirl]

I have sleep apnea and that isn't on the list.

[Elenapap11]

Thank you everyone for replying to this topic.I apologise for omitting some conditions(such as sleep apnea).The aim of the poll is to see the relation of Dysautonomia with some particular conditions and this is the reason why many other health conditions are absent from the list.Have a nice potsfree day everyone.

[bellgirl]

Supposedly 30% of those with dysautonomia have sleep apnea....just saying

[arizona girl]

elena is this for yourself? Having been on the forum awhile there are other polls like this if you search. What particular association are you looking for?

After being on the forum a while there tends to be several illnesses that show up commonly with pots. EDS/joint hypermobility, Mast cell, Autoimmune diseases, mitochondrial and immune deficiency. Many gi issues are contributed to autonomic neuropathy of the small fiber nerves, which are also found in the gi tract.

I was just trying to figure out where you were going with this and if I can help.

[Elenapap11]

Kimbell you have a point so i added sleep apnea to the list.

Arizona i did the poll because half of these are conditions i have been diagnosed with and the other half are things that i suspect i might have. In a recent conversation with a neurologist he suggested that everything i have are separate health issues-which i cannot accept because i keep reading in the forum about identical cases like mine-and that i should take medication for each one indivudually.But i keep asking myself:what if all these disappeared one day because Dysautonomia was gone miraculously?I mean does it make sense that after the onset of POTS i started getting all these diagnosis?And does it make sense to take meds for asthma,allergies,epilepsy,GERD,(now i have to watch out for diabetes because of high blood sugar-which by the way noone has in my family and i always had it normal).I believe that it is wiser to focus on fixing or reprogramming the autonomous nervous system rather that treat the symptoms.

For me adding prescriptions to my list is like trying to treat apendicitis with paracetamol.Yes it stops the pain for a while but in the long term it will become a life threatening situation.And then you go back to the hospital and the doctor has a new diagnosis except from abdominal pain.'Miss X your recent check up showed peritonitis'.But of course this is a different problem for the doctors.

So here i am creating polls that my doctors should have done for me(since they would probably make them better than me)and trying to get answers.Besides the only rational and helpful answers i have received since i was diagnosed with POTS were from the members of this forum.

P.S.Sorry for the long post.I am a bit whinny today because of POTS and allergy symptoms that have worsened.

[arizona girl]

No worries, Whine a way. I tend to write novels myself. Many of us have been where you are. Totally get it! You are right to be concerned about the side effect of your meds. I was placed on steriods (dex) when I first got sick and that did indeed trigger metabolic syndrome. With each med we, me have to decide if the side effect out weigh the benefits. I never start more then one drug or supplement at a time now, for at least 3-6 months if possible, then I know if new symptoms are the drug. If sides get severe I discontinue and let my doc know.

I think you will find that for many of us dysautonomia symptoms are the cause of some other underlying condition, not the other way around. So it isn't the pots or dyasutonomia causing the trigger of these other illnesses, it's the illnesses causing the dysautonomia symptoms. Pots is a symptom, though it is being diagnosed as a disease. To have only a pots diagnosis, all other causes most first be ruled out. So it is a diagnosis of exclusion.

That being said you have to tease out which symptoms may be being caused by an underlying condition/disease and which may be a result of a medication. Steriods and certain other drugs can raise the blood sugar. So asthma drugs have steriods and may raise bs, but can you live with out the asthma drugs, or the epilepsy drugs if they do the same thing? A low glycemic diet, some exericise can help counter that. I myself take glumetza to help control the metabolic syndrome and find it a good med that also inhibits weight gain.

I so wish there was a master specialist, because you are right one underlying condition may be the culpret that is triggering all the other disease states and maybe if we could figure that out it would help all the others calm down. That is the position I am now in, as you find yourself. I have 7 specialist each treating their part of my global illness and most of them don't talk to each other. It can be overwhelming.

As i read some of your symptoms/illnesses you can see that some may be med related and some may be related and part of a complex of illnesses one of which is leading to the others. Frustrating I know!

It is possible you might have an underlying autoimmune or mast cell issue causing things like gerd and heart rate symptoms. Many illnesses can cause small fiber autonomic neuropathy which then causes those symptoms. Treating those underlying causes can improve autonomic dysfunction. My multi specialty treatment plan has improved and treated some of my conditions pretty well, but it is still a struggle at times and if I stopped treatment I probably would reverse. So hope my novel of a perspective helps. Perservere and you will get there. Take care!

[bellgirl]

Thanks Elena, I appreciate you adding sleep apnea. Elena and Arizona girl, I use quite a few supplements to get to the root of the problem. Maybe some wouldn't be so bold, but I'm a nurse and am doing a lot of research, and I hated being a slug, so I took the bull by the horns, so to speak, and started experimenting. I am not recommending that everyone do this, but I started treating the symptoms that I had with supplements; mind you, I'm still on medications, too, but I know they are helping me. You are your best advocate!! My supplements are listed below...my symptoms mimic MS, so I decided I would start taking the supplements recommended for that disease. My energy has increased 10 fold...just saying! Check with your doctor, first

[arizona girl]

Totally agree Kim. Recently my cardio ran some labs and I came back positive for the homozygous version of the mthfr gene. That means I am missing the enzyme that coverts folic acid to the form the body uses. There are many drugs/supplements that use the same pathway to be metabolize, so I am unable to take those drug/sups. For instance methotrexate which is used to treat autoimmune disease I can not take as it causes toxic build up. It explains why I had difficulties with many of the first line drugs I was given. I don't have allergies, so haven't taken those meds your on, but I've taken most of the other meds your on with adverse problems. The one med your on that also has helped me was the blue, I take that as urelle and it does seem to help my gi issues when they act up.

I only take sups under a doctors supervision and actually am on several. I take D3 due to low d, that has finally corrected, methylb-12, which is the active form, that bypasses my gene defect and has now has corrected. I take flax pills and a baby asprin to counter the mthfr gene clotting issues as well-I'll see geneticist in october; I take jarrowdoph to assist gi and yeast issues along with diflucan as needed. I am getting ready to start the prescription sup mantax which will also address the gene defect, but had to do the others first due to methyl trapping.

While sups may be available over the counter, I feel it is important to have your doctor involved in the what ones you take, also many sups are not of good quality and aren't in the natural form that the body uses. I can't take most multivitamins because the b's and folate are not in the active form.

I don't know if you've read my other posts on this but, my extreme hyperandrengic orthostatic symptoms have almost corrected, not perfect but the best in years. My infection rates have dropped due to ivig and most of the vibrating neuropathy has stopped. So, so far so good, still have a ways to go with pain, spasms and fatigue, dryness, heat, standing still to name a few. But things are going in the right direction so I am hopeful.

[Elenapap11]

Kimbell i agree with the comment that we are the best advocates of ourself.For you i suppose things are a bit better in this department since you work in the medical field and you probably know a lot more about medicines and their properties.I had to study hard to learn and be able to communicate my worries in the "doctor's language".About supplements i was hesitant for a while because i was worried they might worsen my symptoms but i have been taking D3,magnesium and folic acid for a couple of weeks now and luckily there were no side-effects(at least not yet).I also took b-complex supplement but stopped after 3 days because i had fluo yellow urine and i got really scared.Then i read an article that suggested that this may happen especially if your body has an excess of B-COMPLEX vitamins.Have you heard of that before?

Arizona i am glad to read that you are getting better.Any improvement that allows you a more functional life is great news.

[bellgirl]

Thanks Arizona girl for the tips on what you are taking; I also can't tolerate multiple vitamins either...Elena, it is normal for you to have yellow urine, because the B vitamins are water soluble and the excess is excreted in the urine. It is the fat soluble ones vitamins that you have to be careful with like A, K, D and E...there are also some fat soluble supplements, too. When they are fat soluble, you are unable to get rid of them and they build up in your body, so you do need to be careful. I need to get more blood work done on my vitamin D3 level to keep an eye on it, too. I was so low, they started me on 4.000 IU's daily for a month and than decreased my dose to 2,000 IU's for maintenance daily. It's been 5 months, but I have an appointment in a few weeks...always refer to your doctor for advice on these.

[arizona girl]

Kim, don't know if you are aware of this but your folic acid and b vitamins also can build up your body if you have the mthfr gene polymorphism. The enzyme that metabolism the inactive forms of those vitamins has been switched, so it can not convert them and they build up in the body. You bypass this defect by supping the active form of those vitamins called the methyl forms and you must avoid the kinds found in most multi-vits and in fortified foods.

Now I understand why I always felt sick when I took those most common kinds of vitamins.

[JAQUIROUIN]

Hello, I also I have Sjogren's syndrome and pulmonary hypertension.