DoozlyGirl

Rama and others, My autonomic neurologist diagnosed orthostatic hypotension and autonomic neuropathy (CV and sudomotor) based off my autonomic testing (TTT, TST, QSART, Valsalva), yet my HR doesn't rise more than 20 beats when changing postions. I haven't been diagnosed with POTS, yet others on this site wonder why not. I do not meet the 30 bpm criteria. My HR is not my issue, but my BP is. My BP is normal or low when laying (110/70 - 120/80) and climbs while sitting (130/90 - 210/110max) then plummets while standing (60/40 - 80/60). Even with my BP dropping from 166/100 to 88/60 in a minute or two, my HR doesn't usually rise more than 20 bps. My symptoms only got worse on zabeta and verapamil but can abort the labile BP, flushing and GI evacuation with antihistamines. I am finding that mast cell activation is likely causing my autonomic neuropathy. I don't believe POTS is part of my equation. What am I missing here? Thanks, Lyn

Brenda, I had to look up where my other two endos ended up after leaving my network. I've also seen Dr Richard Wierich, who trained At Barnes Jewish in St Louis and NIH. His office is in Beloit. He was my first endo and did a thorough job ruling out the biggie endo diseases, and began treating my Hashimotos, then recognized my intolerance to synthroid and offered Levoxyl. After my autonomic dysfunction was diagnosed and it was obvious I needed to see an endo again, I tried to get into see Dr Lalande again, and she admitted she didn't know what else to do for me. I tried to get into see her partner, Dr McGill for evaluation of my swinging BP issues. He refused to see me. I then found Dr Kim Lamack, who trained at Mayo. She was really good to me and helpful in figuring out my blood sugar and BP issues. She has two offices in Mke area and is with Wheaton. Unfortunately she went on maternity leave, left AHC and moved to Mke. My care was transferred within network during her maternity. I liked both of them, and would have stayed with both, had they not left my network. I am now tracking down MCAD, and all of those endocrine workups are very helpful, cause now those endo causes have been ruled out. Good Luck finding a local endo, Lyn

Brenda, Dr Beth Lalande, endo w/ Froedtert, recognized my goofy HR and BP and sent me for autonomic testing. Dr Barboi has been treating me. She admits she doesn't know much on autonomic disorders, but she was thorough. Her office is near Community Memorial Hospital, in Men. Falls. Lyn

http://www.people.com/people/article/0,,20581879,00.html

Hi Maiysa, Thought I'd share a bit about thyroid hormones to add ot your research. There are 4 types T1, T2, T3, and T4, which indicates the number of iodine molecules attached. T1 and T2 float around waiting to be picked up to make a T3 or T4. The body uses T3 in the tissues, but synthetic T3, brand name = Cytomel, is not very stable and has to be taken several times a day. Levothyroxine, brand = Synthroid or Levoxyl is actually T4, and is more stable. But some people can't convert T4 to T3 and need to also take T3 in addition to their T4. Traditional docs believe that Synthroid is the ultimate answer, but docs who think out of the box firmly believe that T3 can help with any residual thyroid issues once you are on a optimal dose of T4/Synthroid. It does take 4-6 weeks for the Synthroid to level out. Hopefully your fatigue will go away. My post mentioned T3 doses. So let's say, if you are taking 100 mg Synthroid, a typical dose of T3 would be 25 mg. Armour Thyroid contains both T3 and T4, and many natural minded physicians tend to prescribe it over Synthroid. I now now my anaphylaxtic reaction was related to MSG triggering my mast cells, but I know that the Armour was likely involved with aggrivating my mast cells. My reaction happened the day after I upped my dose, and I could feel the tachy come on with that upped dose. When you have your blood tests taking in the future, you'll want to have TSH as well as FT3 and FT4 taken. TSH stand for Thyroid Stimulating Hormone, it is actually a hormone released by the pituitary gland, but it estimates hormone function. T3 and T4 can be tested as 1) Bound, which means with the carrier protein, and is reported as Total or TT3 or TT4 or as 2) Free, meaning without the carrier molecule and reported as FT3 or FT4. The FT3 is often considered the best assessment of thyroid hormone that is readily available for the body to use. I hope that you see dramatic results from your upped T4. I am curious, what was your previous dose? Best wishes, Lyn

Maiysa, Glad to see you are piecing together some things. I, too, did better with my autonomic neuropathy when my T4 -thyroid hormone (Levoxyl) was upped. I often wondered if I would do even better with some T3. Within days aof starting Armour thryoid, I went into anaphylaxis, so the natural T4 and T3 option is out for me. If you decide to lookin into T3, the recomended dose is 1/4 of your T4 dose. Good luck, keep us posted, Lyn

Jen, I am so sorry you are going through this. My position was filled nearly two years ago and my employment status terminated a year ago. I cried, too, even I know it was coming. I then mourned the loss of my career identity. But once I got passed that, I could face my "disability". ((HUGS)) Lyn

Bren, I see you have suspected MCAD. Were you aware that betablockers are contraindicated in MCAD? They are linked to direct mast cell degranulation and can cause issues with efficacy of epi during a severe reaction. Sorry to hear aobut this. ((Hugs)) Lyn

I also had mine at Froedtert Hosptial in Milwaukee, WI.

While I am not familiar with the supplement you took which triggered you to go from having medicaiton sensitivity to the opposite effect, I have been reading up on medication sensitivities. This term means different things to different people. Medication sensitivity can mean: 1) allergic reaction to active ingredients (such as penicilin) or entire classification of drugs (sulfa containing meds, such as antibiotics, migraine sumatriptans, HCTZ and scores of others) 2) sensitivities to inactive ingredients, such as gluten, lactose, corn (cornstarch, gelatin, etc), dyes (Yellow FD&C 5 and 6 and Red 40 are huge issues for those with asprin/salicylate sensitivity) 3) non-immune mediated sensitivites (such as crossover medication sensivities with food allergies) or direct mast cell degranulation from betablockers, alphablockers, penicillins, quinolones, sulfas, lidocaine, NSAIDS, anesthesia meds, opiates, and a bunch of other meds. Each of these categories tends to have their own symptom profile. Allergic reactions most notably involve hives, and angioedema, but can also involve GI evacuation (vomiting and "D"), flushing, headache and a host of other symptoms. Mast cell attacks look the same and can end up in anaphylaxis. Nausea can sometimes be addressed by the timing of the meds, with meals, at night, etc. When there are no alternative formulations available, I've read that some even take digestive enzymes to overcome lactose sensitivity, which is due to lack of lactase in gut to break down lactose. Now add in sluggish or speedy metabolism, which is based on GI motility and liver function. Those with a mast cell disorder have documented severe sensitivities to foods, scents and meds. People with allergies, such as hayfever tend to have worsening sensitivities at peak pollen times. Medication sensitivities have been reported to be triggered by a chemical injury (such as mold exposure or chemical overload), surgery, massive doses of meds after hospitalization, vaccines, untreated/undertreated autoimmune disorders, general metabolism shifts or other reasons. As you can see, it is very complicated. Best wishes in figuring it all out.

Unless of course the primary physician wants to rule out mast cell involvement as a potential cause of the POTS. Many mast cell disorders are seen in skin issues and dermatologists can biopsy spots, rashes and collections of cells to identify misbehavin' mast cells.

Hi Bella, I was diagnosed with obstructive sleep apnea, significant insomnia (often go 48 hours without sleep), and delayed sleep phase syndrome (messed up sleep timing control) within months of my failed TTT and diagnosis of autonomic neuopathy. I have used a sleep APAP machine for over 18 months with few issues, and generally felt better with it, until recently. Over the past several months, I have been so reactive to everything, and have been pursing MCAS. Two docs confirmed my suspcions and being referred to a MCAS expert out of state. In the past few months, I can't tolerate using the APAP unit. I have figured out that I am reacting to the plastic tubing, as well as sensitivity to the smells coming from the unit. I have disinfected the unit regularly and figured out that now that I am so reactive, I am reacting to the "outgassing" from the plastics from the new mask, tubing and insert tub that I used 6 weeks ago. Others with MCAS/masto have also reported this and have had to unpack their tubing and mask and keep out for weeks before they could tolerate the tubing and mask. Interesting for me, once I began taking H1 and H2 on a regular basis, I don't need Ambien as often and find I can fall asleep without them about a third of the time. A step in the right direction. Good Luck sorting this all out. My autonomic neurologist told me I would not get better until I could regain restorative sleep. he was right, I did have a significant increase in activity after starting my sleep regimen. I was previously bedridden for months. Lyn

Ash, I noticed you also had apple and lemon each time in the kale juice. You may want to consider eating some kale without the lemon and apple and see if it is the kale causing you issues. Or it could be lemons or apple. Beware that it could also potentially be whatever these veggies were sprayed with. Lyn

Thanks for your responses. My referral is being sent this week, so am now just waiting for an appointment time and date. I have 2 physicians, a NP, and pharmacist waiting for instruction how to treat me. Please keep us posted on your upcoming appointments. Any idea how long you will be there? Thanks, Lyn

Maiysa, You are right, and I feel it is fitting we both simultaneously found MCAD to possibly account for our many similarities (autonomic neuropathy not POTS, OH, high BPs, "seizures", GERD, fibro, syncope). Skin biopsy was of my chest due to crazy flushing/blotching/hives, but I also have other skin related rashes. I likely won't need a BMB since my tryptase is only 2.5 and there is little probability of systemic mastocytosis in my case. My symptoms indicate more is involved than just my skin, and my biopsy didn't show lots of mast cells, ruling out cutaneous mastocytosis. I do have skin involvement, but my diagnosis is mast cell activation syndrome. I've figured out I'm a leaker and have chronic low grade anaphylaxis on a regular basis, but have also shocked. I've requred Epi multiple times, but never had to self administer. I can tell by your posts in the past few days you are a bit confused. Let's see if this helps. Mast cell are located in nearly every organ, so when they say systemic, that's all it means - it is in more than one organ, which is generically called systemic. You already got you MCAS diagnosis, so I don't think you have to worry about the other things, like cancer. You are likely confused by the term Systemic Mastocytosis, which is a name of the other end of the spectrum. Systemic Mastocytosis is known as a proliferative disorder, meaning there are too many mast cells. In SM, there is also mast cell activation, which blends in with what we've been diagnosed with - MCAS, but we don't have too many mast cells, as estimated by the tryptase level below 20. WHO defines SM as having a tryptase of 20 and mast cell aggregates of a certain size to meet that criteria. Your doc may want a BMB to look for those aggregates of clustered mast cells in the bone marrow, since your tryptase is higher than mine. Do you know what kind of testing is planned for you? Allergy testing? Metabolite testing looking for PGD2, N Methylhistamine, or heparin? My dermatolgist already put me on H1, and I resumed a H2 for GERD. I am now working on identifying my triggers and working on cleaning up my diet. I react pretty consistently to tartrazine/yellow food dye also found in meds. I am now looking into red food and med dyes as a likely trigger for me. Which will make things tough since zantac and generics that I have found all have red dye in them. I've read that Dr Castells will NOT take anyone off meds to test, even some allergy testing. Hopefully you can go on meds right after your next appointment. I noticed an immediate improvement in some things within the first week of a H1 and even more changes with the H2. Looking forward to adding other meds to stabilize me. Maybe you can go on H1 and H2 then stop for a few days before your May allergy appointment. You may want to find out if the allergist is going to test on your first appointment or if you have to go back at a later date for allergy testing. This may help stablize you in the meantime. I pray we both get our lives back. Keep in touch and let me know how your next Hematology appointment goes. ((Hugs)) Lyn

Thanks Corina, Maiysa, amd Katie! A whole new world to master. Maisya, No worries, I don't see it as a new disorder, I truly feel this is the right disorder! I can't wait so see how many of my existing disorders (central sleep apnea, syncope, orthostatic hypotension, chronic hives, anutonomic neuropathy, delayed sleep phase syndrome, chronic fatigue syndrome, multiple chemical sensitivity, fibromyalgia, migrainers, IBS, GERD, Hyperinsulinemia, insulin resistence, reactive hypoglycemia, allergic rhinitis, Vitamin D deficiney, anemia, metamenorhhagia,and more ) may fall under this one diagnosis and go away with a proper MCAS regimen. Time wil tell! Congrats on your new diagnosis! My autonomic neurologist sent me for a skin biopsy due to my weird looking hives, blotching and flushing. The biopsy, showed plasma cells, histiocytes and lymphocytes and demonstrated vascular flushing, meaning my blood cells leave the vasculature and escape to my tissues. This greatly impacts my orthostatic issues. I also have superficial blood vessels in the skin, which aren't suposed to be there. My tryptase was only 2.5, so ruled out systemic mastocytosis. All of this with my current and past symptoms in addition to the fact I have been treated in the past for MCS, allergies and anaphylaxis with the same meds used in a MCAS regimen and have gone into remission! I am now being referred to a mast cell expert for consultation and treatment plan. How about you, what are your future plans? Please keep in touch so we may compare notes. Thanks, Lyn

You could try to build a case to convince your insurance company that they don't have POTS specialists in network. I know of several people with rare disorders that have been able to elevate an appeal to the medical review board of the insurance company (physician review) who have been granted in network status for these out of network providers. I plan to do this once I make some progress on reclaiming my health with a new MCAS regimen.

I can't believe I missed a very important drug class. Betablockers are also mast cell degranulators and can cause havoc for those with misbehavin' mast cells.

Hi everyone, Wanted to share that with the help of my cyber friends on DINET and the Mast Cell Disorders, I have just been diagnosed with MCAS as the trigger of my sympathetic overdrive, orthostatic issues and autonomic neuropathy. When I first read about MCAD on here, I didn't think it applied to me, even though several of you sent me messages or posted that I should really look into mast cell disorders. I already had dealth with multiple chemical sensitivity, multiple food and drug allergies, and anaphylaxis, but those symptoms seemed to have been settled with my previous treatments (which interestingly involved several drugs used for a typical MCAS regimen). I have learned a few things that may help you sort out the mast cell information out there. I did not know that the clinical diagnosis of anaphylaxis doesn't have to involve tongue swelling or breathing issues!! For example, there are 4 levels of anaphylaxis and my episodes involving: skin (such as flushing, hives, or rash that comes and goes) GI - evacuative, sudden "D" and vomiting Cardiac - orthostatic or low BP meets that diagnosis. Well this just opened up my word!! I have now been able to find a bunch of new triggers and explain that most of the meds I can't tolerate are mast cell degranulators! This means I have been poisoning myself for years. If you have trouble with antibiotics (especially penicilin, sulfa, levaquin, cipro,, vancomycin, etc), codeine, opioids (morphine, hydrocodone, etc), NSAIDS (ibuprofen, Aleve), skin anesthetics (lidocaine, marcaine, etc), other sulfa meds, like migriaine triptans, topamax, diuretics (lasix, hydrochorothizide), muscle relaxers contrast medium (x ray dye) adenosine then you may want to look into mast cell disorders as a potential cause of your POTS or other autonomic dysfunction. I urge anyone with unexplained reactions to anything from fricture, pressure, heat, cold, water, foods, meds, perfumes, hormones, and changes in barometric pressure to consider misbehavin' mast cells as the cuplrit. Check out the many great discusisons on here to learn more. Best Wishes and thanks for sharing your stories. Lyn

I agree that you may want to look into a mast cells connection to your episodes. I never connected all this until recently, and in 3 months have learned so much and even thorugh I still have issues, I have a much better idea of why my body is doing all this wierd stuff. In the past two weeks there have been some interesting posts on mast cell disorders that you may want to check out. Mast cells play an important role in the immune system and as others have stated can play havoc when they degranulate or dump their chemicals into the body, namely Histamine, but there can be hundreds of chemcials dumped. These chemicals can induce imflammation, cause pain, HR and BP issues, flushing, vomiting, "D", syncope, etc. There is a relatively newer disorder called mast cell activation syndrome (MCAS) which is linked to people with autonomic issues and connective tissue disorders. There is quite a bit of research that makes several researchers believe that misbehavin' mast cells are at the root of numerous chronic illnesses, POTS being at the top of the list. If antihistamines make your autonomic symptoms better, this is a big sign that histamine is likely involved as a cause of your reactions and should prompt your doc to pursue this as a cause of your autonomic dysfunction. Good Luck! There are several of us on here that have already been diagnosed with MCAS, so all you have to do is ask, and we can point you to other mast cell resources. Lyn

Wimps couldn't handle all the crap we deal with on a daily basis! Just like "There is no crying in baseball" a la Tom Hanks in a League of their Own, I proclaim, "There are no wimps in autonomic dysfunction"!!

Kayla, Did you have a chest x ray after the procedure? Do you know what kind of port you have? Is it a mediport, where it is buried under your skin and needs to have a needle inserted in order to use it? Is it burning/stinging all the time or only when fluids are being inserted? ((hugs)) Lyn

The epi is usually drawn up along with lidocaine, marcaine, etc to limit bleeding. I recently had a skin biopsy and asked which meds the doc was going to use. I then asked if he could do it without epi. The dermatologist was a bit stunned, thought about it, then when I said I would take an extra stitch, he thought that was a good idea. Best wishes during your procedure. Lyn

Thanks RAMA. For me, it meant that my docs have moved on to other potential causes. I will keep your point in mind as I move forward and keep an eye on the research.

Jen, I have been reading your posts with great interest. I am so sorry you are going through this. I also have autonomic neuropathy, severe OH, and lots of autoimmune issues, but my autoimmune panel is negative for AAN. I am not sure if any of this fits your scenario, but we are finding that my presyncope OH episodes are actually part of a cascade of symptoms that always varies, but pointing to ongoing chronic daily low grade episodes of anaphylaxis. I uaually have facial flushing, blotching on my neck, headaches, nausea, dizziness, vertigo tinnitis, sitting orthostatic hypertension and standing orthostatic hypotension, tachycardia, night sweats, vomiting, and other GI issues, and the list goes on. I am seeking a diagnosis of mast cell activation syndrome/disorder (MCAS/D). I have been reading up on anaphylaxis and I wonder if maybe your mast cells, which are triggered to induce all those symptoms and more may also be involved. Many MCAS patients have autonomic dysfunction and a chunck of patients ALSO have a connective tissue disorder. Several patients on here have that Triad. I'm sure others will chime in. As others have stated, a connective tissue disorder can be considered later. Your first mission may need to be checking out mast cell disorders and see if you think that will fit your history. You will need to be prepared for a potential future severe reaction, and checking out the emergency protocols at wwwtmsforacure.org is a great place to start. If that is the case, once you get into the research, you'll learn that they might not recognize mast cell disorders outside of systemic mastocytosis. You may want to consider that there may be other variables to inducing your severe reaction which could potentially include that connective tissue disorder you have. This immune deficiency syncdrome may add a few wrenches into the mix, but those with mast cell disorders have odd reactions to all sort of triggers (meds, foods, smells, additives, chemicals, etc.) Good Luck on sorting this all out. You really need 2 EPI pens and may want to also carry a H1 and H2 antihistamines to help with any future reactions. Lyn Where do you live? I know you are near Rochester, but where?