kluesyk

Jangle, I take a mix of celestone/kenalog steriod shot in my hip. I also have a history of mixed connective tissue disease(20 yrs ago...very elevated ANA and sed rate, that is now normal) and now have Hashimoto's Automimmue thyroid antibodies. I just know that I have a dramatic improvement for 2 1/2 weeks, but long term high dose steriods have side effects, so I have to weigh it out and only get the shots when I have to fly or am sick.

I agree with your responses above. I was VERY active and had horses that I took care of when my POTS started. I had pregnancies, ect that I was not active and DID NOT develop POTS, then. Now if I walk 3 minutes on a treadmill(stress echo test),my heartrate is 180 and my BP is 175/110. My cardiologist said I can't keep doing that...heading to stroke city. So maybe in a small subset of patients, exercise does help. Not me. It is everything my body can do to just get me upright and walking for a short time. Wish they would take into account people like us who do not fit the box the drs always try to fit us into. I did have thyroid and adrenal failure and then finally diagnosed with POTS, so perhaps mine is a bit different, so that needs to be included in papers written also.....the fact that there ARE POTS patients that DO NOT benefit from exercise, in fact will make them worse.

Steriods DO help me, but I have an autoimmune component to my problems. Have Hashimoto's and mixed connective tissue disease 20yrs ago, that dr still thinks is causing problems even tho my ANA is neg. A kenalog/celestone shot in my hip will give me not total relief, but a huge difference for about 2 1/2 weeks, then it goes back to the way it was. Unfortunately steriods have bad long term side effects, so I only use that when I have to be on, such as flying in an airplane, ect. I run around like crazy trying to get everything done in the short time I have before the muscle weakness, shaking, pain, migraines, dizziness, tachycardia and mental fogginess returns. Newest failure is my immune system....low CD4 and CD8's which will jump from around 200(CD4) to 500, 1 1/2 weeks after a steriod shot, so my dr is looking into WHY steriods lets my immune system recover. My CD counts go back to low after a few weeks. There definately is a connection in my case, just wish drs could figure it out.

Congratulations on a diagnosis! I am waiting on blood tests to come back from my visit with Dr Afrin the end of July. I was very impressed with him and hope he can help me, too.

I have had shingles 4x in the past two years. However my immune system is really low..CD4 counts....with no know cause. I am HIV negative, so that is not the cause. A steriod shot will raise my counts to low normal for a few weeks then they go back down, so dr thinks it is autoimmune related. Acyclovir helped stop the progression of the shingles, and it was a week after the pain started and a few days after the rash appeared when I started it, so I do think it helps. Lyrica has helped stop the long term nerve pain. The last time I broke out I had an accupuncture treatment which really helped the pain. Hope you feel better soon. Shingles are not fun.

I have chronic mycoplasm p, POTS, low CD counts, and high neutrophils. I also have had shingles 4x in the past 2 years....another indication of my low immune system. My counts are getting really low so I am seeing an immunologist next week. I do think it is all related in some way....just wish I could get to the core cause.

Ditto on Firewatchers experience. It was good to have a diagnosis and Dr. B was great on suggesting further care through online communications after my appointment. However I did not get a cause for the POTS, just that I have it.

Issie, I take a replacement dose (30mg) of (hydrocortisone)cortisol for the adrenal failure (addison's) which I absorb better sublingually. I did not do well on prednisone (had too many side effects). My dr had me add extra medrol 2mg along with the hydrocortisone which helped for a couple of weeks then I got abdominal swelling, weight gain (all symtoms of too much). I haven't tried the transdermal. Is it a patch?

It would seem to be reasonable to me....but that which the doctors do not understand they do not embrace. You will only find one willing to look outside of the acceptible box (you should fit into, which we don't) only IF they are interested in research themselves. I do believe that POTS is multi faceted in it's causes and therefore very difficult to find one solution, however when you have a dramatic improvement after a steriod shot (much more than, "Oh it made me feel better and I had more energy") then I DO feel it indicates autoimmune. I am able to talk longer without shortness of breath, can walk farther without the increase in HR and BP, can use my muscles more without the horrible shaking and pain that happens after. But I know my repreave is limited. I always go back to where I was in 2 1/2 weeks.

Katybug, I too have a remarkable improvement with steriod shot but not so with oral medrol or prednisone. I had similair reactions as you with the oral steriods. I told my drs after the shot that this is the fix for the problem, but they have yet to pinpoint what it is helping. My neurologist told me at last appointment that I should donate my body to science when I die....might answer a lot of questions as my health issues are so complex. I have autoimmune thyroid and 20 yrs ago a high ANA and sed rate(mixed connective tissue disease) that went into remission after three years. At least it appeared to....the ANA went negative and sed rate normal. Still my ANA is neg today, but have amazing results with steriod shot. If I know I have to function well or fly in an airplane, I take a steriod shot. It gives me a good 2 1/2 weeks.

I have a marked improvement when I receive a steriod shot in my hip of kenalog/celestone. It lasts about 2 1/2 weeks, but has overall bad long term side effects. Recently been trying low dose naltrexone to try and reset the immune system as I also have very low CD4 and CD8 counts with negative HIV. Had good results for first 2 weeks, then shingles have returned on my back. Will see Dr tomorrow to decide whether to continue.

I take Lyrica at a very low dose (25mg at night) which helps with my leg muscle pain. If I take more I get too much dizziness. I did not do well with Topamax. Made me feel really weird in the head. These are only my experiences, you may react completely different. Good luck!

I have low cortisol (addison's) along with low thyroid and H-POTS. My adrenal failure was picked up by an ACTH stim test. My base cortisol was only 3.9 and after given the ACTH it only went to 6.1. My ACTH levels were also low. I never had the hyperpigmentation (probably because my ACTH was so low). I currently take 35 mg of Cortef hydrocortisone as replacement. I am strange in that my potassium, sodium, magnesium and sometimes chloride go low. I can't tolerate Florinef(due to migraines) so balancing my electrolytes are difficult. Usually potassium is high in addison's but with me it has always been low. If your cortisol is that low, you definately need an ACTH stim test to determine if you have addison's. Hope you feel better soon!

Yes. Without Zyrtec, Benadryl and Pepcid I get much worse. I have been taking Benadryl since 1991 and zyrtec since my fast onset unexplained appendicitis in 2004. I have unexplained angiodema like swellings since 1991 and the H1 and H2 help keep it under control. I had thyroid failure in 2006, adrenal failure in 2007 and a H-POTS diagnosis at Vanderbilt in 2011. This year my immune system has tanked with very low CD4 and CD8's. I had 20 years ago a three year episode of autoimmune mixed connective tissue disease...but now ANA is negative and sed rate is normal. A celestone/kenalong steriod shot in the hip will dramatically improve my health for two weeks....but have bad side effects long term. . I also have hyperextensive joints and have a strong family history of death by aortic dissection and aneurisms. I also had a grandmother and aunt that had swellings and unexplained pain all their lives. I DO think their has to be a core problem for SO MANY failures to happen with me. I recently reacted VERY BADLY to iodine CT contrast which I found out later is a known mast cell degranulator. I also have strange reactions to medications that most people can take. I see Dr Afrin later this month. It is a LONG trip for me so I am hoping he can help me. at this point I am very discouraged....most Drs I see only do massive testing and then don't help me....they say I am too complicated.....gee that sure doesn't help me.

YES!!! I had rabies vaccine in 1964. I have always thought that it contributes to my abnormal immune responses and mention it at my Dr appts, but no one pays any attention. The vaccine that was being used then was one called "Semple rabies vaccine". We quit using this in the US and the vaccine was shipped to India where there have been lots of papers written about neurological and autoimmune disorders it can cause, some 20yrs after vaccination. I will always feel it is a big part of why I am so sick today. BUT that was all that was available at the time and it did save my life.

I have been on Acyclovir 400mg a day now for over 5 months as well as pulses of Azithromycin 250. I test positive for mycoplasm pnuemonia antiboidies and have VERY low killer cells CD4 and CD8. The CD4 and CD8 did go up for a while after 6 weeks of 1x week myers cocktail and magnesium infusions.(Had to stop due to excessive bruising/bleeding at infusion sites) If I stop the Acyclovir I break out in Shingles. If I stop the Azith I have terrible muscle pain and teeth pain. So I am one who also has POTS that this helps.

I have this too. Hard to explain to drs that any muscle use can cause shortness of breath, hr and bp increase, even talking very long..... Myasthenia Gravis has been ruled out.....so they just give up on me and tell me to live with it....so my life has become very narrow....and not much physical activity.

Definately use the wheelchairs at the airports. If I try to walk much I find I have problems on the flight....chest pain, shortness of breath, ect. Be sure you are hydrated and use the compression hose. I know this is strange, but I order hot tea, and a coke with lots of ice and alternate the hot and the cold drinks(and eat the ice)....tricks my ANS into behaving! I also take a benadryl before the flight. The only trouble I have had is the assent and decent and that is only if I have walked much before the flight. Get up and move as soon as the seatbelt sign is off.....I usually have to go to the rest room. Bulkhead seats are more roomy, but some airlines make you put your purse(which has all my meds in it) in the above bin as you have no seat in front of you to put it under. I tried hiding it under my feet, but a few made me put in up anyway. I don't like being seperated from my meds...I also have addison's(adrenal failure). I took my handicap tag with me....got a multipocket info tag that I could put around my neck, put letter from dr stating I needed to carry my meds on the plane(I have syringes for the Addison's if I have a crisis) and that I would need assistance as I cannot walk very far without BP and HR increasing too high, and the handicap tag in it and $5's in my shirt pocket for tips to the wheelchair people. If your airline has first class seperation talk to the stewardesses before you take off and explain you can't walk very far and need to use the closest rest room(which if you are bulkhead will be the front first class rest room). I have had first class customers and stewardesses be VERY rude to me when I tried to use that rest room unless I talked to the stewardess before and explained my health issues. Try to stay very calm....read a book, ect that helps a lot. Hope this helps and you have a good trip!

I do have white matter hypersensitivites that I never had prior to POTS so maybe is related.

Yea!!! I am so excited for you that you are feeling better! I am printing off this as I have a good deal of the same issues as you. It would be great to exercise again!

Idiopathic(do not know the cause.).... Low CD4 and CD8's....low killer T cells. I take Acyclovir to keep shingles from breaking out as I have such a low immune system, but I have autoantibodies to thyroid, ect, so mine is VERY misguided. Try to stay away from large crowds and sick people.

CharmedLinz, Yes, we do sound very similair! I do think the head trauma contributed to my problems. I had a VERY bad reaction to the ACTH stim test. It made me VERY sick. Chest pain, nausea, felt like I had been punched in the stomach, bad left adrenal area pain, very increased urination, weakness and shaking. The left adrenal area back pain and increased urination lasted for several weeks after...not sure what happened. Dr's had no explaination, just would look at me strange and say it was not related to the stim test, (but it happened for the first time during the stim test and thereafter, so YES it is related.) I love how when they can't explain something, it just doesn't exist. My base cortisol was only 3.9 stimming to 5.9 in 60min (anything below 10 is abnormal) so I was pretty bad. My ACTH was only 16, so my pituitary was not asking for any cortisol even tho my cortisol was only at 3.9. Also my adrenals did not respond much even when given ACTH, so I think I have both components of secondary(pituitary) and primary adrenal insufficiency. I am also low on renin and aldosterone. My neurologist doesn't seem to be concerned with the white matter areas with me either, said it might be migraines or related to the adrenal failure. I don't think it is the migraines because I had several migraines in one year and the number of areas had NOT increased from one year to the next on the MRI.

sue1234, I just don't seem to absorb my cortef if I swallow it and it goes through my digestive tract. I have recently found if I let it disolve sublingually I actually get it into my system....so something is off in my digestive absorbtion....might also explain the other deficiencies, vit d, magnesium, potassium, sodium, protein is low also....nephrologist keeps telling me to eat more protein, and I tell him I eat protein bars with 19g of protein, take a whey protein shake every day and eat eggs and chicken and fish and I still show low. I have tested ok on celiac, so I don't think it is that. Corinna, I too had problems getting pregnant(had to take clomid) after a first miscarriage. Had gestational diabetes with second pregnancy also. How did you get your Dr to give you octreotide? How does it help with the POTS?

I try to eat high protein, low carb diet and feel the best on it. My glucose tolerance test shows I go really high then bottom out with my blood sugars. Last endo said I had "insulin resistence" and did a trial of Metformin. I took 1/2 dose for 9 days(due to digestive issues it caused) and majorly crashed...ended up in the ER with tachycardia, left side diastolic dysfunction, severe chest pain, shortness of breath and felt like I could not make my legs work.....took 4 weeks for me to drive a car again and regain much function....it was awful, and the worst was the drs said at the ER, "just don't take metformin again". No explaination. My urine PH went high and my GFR function dropped to 50 also. I am always on the borderline of dehydration and my potassium, sodium, ect is low and it does say on the metformin information not to take it if you have these things.....gee you would have thought the dr would have told me. That is the problem....I have so many things out of balance that to introduce a new drug is very risky for me.

I have low cortisol, with low ACTH, low TSH with low Free T-4, mid range Free T-3 with hyperadrenergic POTS which all developed following a blow to the head by a horse, so the possible involvement of they hypothalmus is very interesting to me. I have no tumors that are visible on a brain MRI, only 5 hypersensitive (light) areas bilaterly(not near pituitary). I wonder if I had a bleed after the head blow or just enough disturbance that it set off an autoimmune problem. I do have anti-thyroid antibodies and steriods help me ALOT. I drive endocrinologists crazy. They have a hard time making sense of my labs. With Addison's your ACTH should be high, cortisol low, and mine is ACTH low, cortisol low which points to the pituitary as the problem. I also have low potassium, not high which is usually seen in Addison's. My TSH is rock bottom 0.01, but yet I still have symtoms of LOW thyroid. Dr's in the past have dropped my thyroid meds due to the non existent TSH and I have gotten sicker each time until I found a Dr that "got it" that the low TSH points to central hypothyroidism (again pituitary based). Again, the POTS problem could also be based out a damaged hypothalmus. My renin and aldosterone are low also as well as sodium, potassium, chloride and magnesium. My kidneys waste 4x the magnesium. (Dr doesn't know why). I just try to replace what I am missing with the sodium, magnesium, ect. Lately I have been taking more Vit C (2000mg spaced out over the day), quercetin, more magnesium, and taking my hydrocortisone(replacement for Addison's) sublingually instead of orally(I seem to have an absorbtion problem) and have been feeling much better lately. Never had my ADH tested, the nephrologist had me try a trial of dermopressin(sp) but I had severe migraines with it. I have VERY low urine osmoality and in 24 hr urine test my output was REALLY high.... Since I can't take florinef or dermopression, I take licorice which helps some....I don't run to the rest room as much now. I hope you have good luck at Mayo, get some answers and feel better soon!