Kellysavedbygrace

E, what test did they do to Dx this? I haven't heard too many others discuss this type and wonder if more of us aren't in this category.

Thanks all for your input on this. I agree that getting to the underlying cause is a key- I have suspected MCAS and am awaiting final lab results which I suspect will confirm this. I've started taking antihistamines and they do seem to help a bit. A study on this for us older folk would be so helpful.

Welcome to the site. Sounds like you are getting much closer to a Dx and that is half the battle (albeit the easier half.) It has been a blessing for me too. I'll be interested to hear about yout TTT. Please let us know how it goes.

Oh I am so sorry to hear that news. Ugh!,, I'm frustrated with you this evening. I'm not sure if it will help but I'll share with you my thoughts about what I learned. I was approved last month on applying the first time. I actually expected I'd be dealing w denials and appeals but did not. I did have an attorney, although I did not need or really use him. He made a bunch of money for a one hour meeting many months ago and a little bit of correspondence. Here's why I think I was approved: - two recommendations from docs both saying I was completely unable to work. (one written by an Autonomic Dysfunction specialist who has filled out these forms before) - almost all my paperwork was actually completed by my husband's executive assistant who has a legal background so she was very detailed and specific with examples- such as "she is unable to stand without fainting for more than 3-9 minutes but becomes symptomatic after 30 seconds" throughout their questionnaires. (I think I had about a dozen different forms to complete- I had extra because I own a business). This was not out of convenience but eventually out of necessity- I tried for many weeks but just couldn't mentally do it and put the info together. - I don't know why this is but the Dx on my SS paperwork was a surprise to me- (I don't have it in front of me otherwise I would tell you what it said but it said nothing about POTS or NMS (which I consider to be the most clear Dx thus far) it did refer to an arrhythmia I recall. But thought you might want to know about that. You are in my prayers as you continue this battle. Don't give up. Make sure you dot every I and cross every T and at this stage I would hire a lawyer. Feel free to PM me if you have any other specific questions.

Most of the literature out there on Dysautonomia (POTS/ NMS) reports with sample sizes that are small and average ages being much younger than me. I've had some doctors tell me that since I have POTS it is likely to improve over time or eventually go away. According to some studies there is significant evidence of this in the younger ages (15-25) but there is little in the literature supporting this in the more mature population. One autonomic dysfunction center even says in its patient literature that in some cases, older patients report a decline in health. My mom and I were discussing my progress (or lack therof) last night and we both think my condition is slowly getting worse. Some new symptoms, or symptoms getting progressively more pronounced such as what used to be licorice legs has, at times, turned into me not being able to put weight on my feet (on a couple of bad days the past week). And what used to be a shortness of breath is now often combined with an inability to speak in full sentences- just a few words eek out. Yet, all along I've been told/read that this condition (Dysautonomia- POTS & NMS) is not progressive or degenerative. For those of you over the age of 40 I'd love to learn about your thoughts/ wisdom on this topic.

So Kim, My mom and I were discussing my progress (or lack therof) last night and we both think my condition is slowly getting worse. Some new symptoms, or symptoms getting progressively more pronounced such as what used to be licorice legs has, at times, turned into me not being able to put weight on my feet (on a couple of bad days the past week). And what used to be a shortness of breath is now often combined with an inability to speak in full sentences- just a few words eek out. And your new symptom reminds me of this discussion. Yet, all along I've been told/read that this condition (Dysautonomia- POTS & NMS) is not progressive or degenerative. Would love your opinion on this. I'm thinking especially about those of us who get Dx a little later in life. Any thoughts? In fact, I think I'll start a new thread on this.

I am so sorry to hear about your pain - I know it can be excruciating as a family friend has it. And although I don't have it I do have something weird going on w my Trigeminal nerve. It is as if it is aggravated. Not a constant pain, and not a sharp pain but on and off tingling, numbness, achiness, and dull pain that seems to have an effect all over the trigeminal nerve. Sometimes I get chin twitching w it, eye pain / migraine pain, etc. Most common pain is right around the areas where I had the dental work that was the trigger for my initial onset last year and relapse this past summer. While I have been typing this I have had a dull pain in my lower left jaw and a slight painful tingling in my upper left gums. As I read your post I wonder if you ever had any of these types of aches/ sensations prior to the sharp pain and difficulties you are having now. (I've often wondered if this isn't some sort of either precursor to trigeminal neuralgia or a weird variant. My neurologist doesn't know what to say about this other than suggesting that I get a major dose of antihistamines prior to any future dental work as the trigeminal nerve can release lots of histamines when irritated.)

Issie, that is awesome news! So glad to hear you are having some improvement w the GastroCrom. Look forward to hearing your report at the 6mo mark. Kitt, Lowest BP I had recorded on BBs was 57/31 - but that was an unusual one. Had lots of BPs in the 80/50 range on BBs when I was symptomatic- especially following exercise. Still get a few of those now and then but it seems not as much. Averaged more like 95/65 on BBs now average 100/68- not that much difference. The Bpms have definitely been higher and when symptomatic I can get really high ones but the symptoms associated w high HR are much easier to deal w than the low BPs. With high HR I just go to bed and eventually I recover from symptoms- often a low BP means I'm already in bed and no amount of salt and Gatorade are helping. When really bad I need ltrs of IV saline to help me recover. NMPotsie, The thing with MCAD is that when the mast cells degranulate they can release 200+ different mediators (chemicals, neurotransmitters, etc) and one MCAD patient may have an entirely different presentation than another because the Mast cells are mutated- therefore the chemicals that are causing havoc for me may be different than the ones causing havoc for you. This would also explain why Issie has improvement after 2 wks on GastroCrom and ChristyDs son did not have the same experience at 2 weeks. Yet both have MCAD. That is why the trial and error of different meds, combo of meds, supplements is so key. This may also explain why some have really bad flushing and some do not. Anyway, all that to say, don't give up, you are not alone. I don't quite fit the profile of others either.

Issie, that is awesome news! So glad to hear you are having some improvement w the GastroCrom. Look forward to hearing your report at the 6mo mark. Kitt, Lowest BP I had recorded on BBs was 57/31 - but that was an unusual one. Had lots of BPs in the 80/50 range on BBs when I was symptomatic- especially following exercise. Still get a few of those now and then but it seems not as much. Averaged more like 95/65 on BBs now average 100/68- not that much difference. The Bpms have definitely been higher and when symptomatic I can get really high ones but the symptoms associated w high HR are much easier to deal w than the low BPs. With high HR I just go to bed and eventually I recover from symptoms- often a low BP means I'm already in bed and no amount of salt and Gatorade are helping. When really bad I need ltrs of IV saline to help me recover. NMPotsie, The thing with MCAD is that when the mast cells degranulate they can release 200+ different mediators (chemicals, neurotransmitters, etc) and one MCAD patient may have an entirely different presentation than another because the Mast cells are mutated- therefore the chemicals that are causing havoc for me may be different than the ones causing havoc for you. This would also explain why Issie has improvement after 2 wks on GastroCrom and ChristyDs son did not have the same experience at 2 weeks. Yet both have MCAD. That is why the trial and error of different meds, combo of meds, supplements is so key. This may also explain why some have really bad flushing and some do not. Anyway, all that to say, don't give up, you are not alone. I don't quite fit the profile of others either.

My pots was triggered by a root canal following an abscessed tooth. I have since had dental fillings that caused a severe relapse. I know of several others who have had dental difficulties. For me there is something involving my trigeminal nerve as when my myofacial pain is at it's worst I can feel throbbing down all three branches of the nerve. (chin, upper jaw, behind the eye) I agree with above, I think it is a POTS thing- my best guess is that any invasive measure near that nerve releases an abnormal level of histamine causing havoc. The area around both my root canal and fillings ache and have parasthesia on and off. The more symptomatic I am, the more likely I have pain in those areas.

Kitt, sorry to hear youve been feeling so lousy. I also have low BP. On BBs I have had my lowest recorded BPs- although Im normally pretty low. I have discontinued use of BBs due to side effects/fatigue low HR/possible hair loss. I have had two tilts- 1st one stopped at 5 mins second stopped at 9 mins. Since antihistamines are avail over the counter it wouldn't hurt to try- but usually for us we need more than the recommended OTC dose so that's why it's import to get tested and work w a doc who can recommend right dosage. As far as MCA- I think you are right on- think it is a much bigger player in POTS than at first glance. I see the new Dx as good news because it helps to explain the widespread multi system dysfunction And it is something that is currently being studied.

Yes, I think she was talking about my post that I would contact the nurse to find out how Issie can participate. Then I said I'd post the answer here in case others were interested in participating. Issie, I'm still waiting for the info but will PM you with it when I get it.

I struggled w flying before the Dysautonomia w really bad phobias so I was quite petrified to fly this past summer. In preparation I not only daly and fluid loaded but I got ultras of saline IV first thing in the morn before the flight out and flight home and I took low dose Xanax. I also made arrangements with the airlines in advance to sit in the bulkhead or exit row so I could elevate my feet. I was worried about high Tachycardias, shortness of breath and syncope. I also spoke w the head flight attendants to alert them of my condition. As it turned out I did pretty well. Stayed in tachycardia for duration of all 4 flights - but mostly low (100-115), very little breathing issues and just my normal dizzy self- no blackouts/ grey outs. I did work diligently to get up and move as much as possible ev.en doing calf raises, squats in back of plane. My only concerning episode was getting on the last leg home. It was hot, we had just been hustling because of a short layover and then there was a back up on gangway to board the plane. I couldn't stand in line so I had to keep kneeling/sitting to keep from fainting. By the time I boarded my HR was in the 150s- once seated/ feet elevated it came down to lower level.

I seem to get hair loss w steroid use-- not 100% sure but both times I've been on them this past year that was a prominent side effect and I'm not up for testing the theory further. I never had a migraine before Dysautonomia onset. They are terrible and steroids definitely makes them worse for me too. It seems however that there are lots of things I can't take (SNRI, Beta blocker, Immitrex, etc) bc of side effects and heightened sensitivity to the drugs.

Last Feb I saw Dr. Jaeger for an autonomic workup. Dr. Found performed several of the diagnostic tests. I liked them both. Dr. Jaeger was easier to understand and he spent a considerable amount of time with my husband given that he is the Director of the Syncope lab and is so busy. He is a cardiologist so if you have more cardio issues he may be very helpful. If you have more neuro issues, like me, he may send you for a consult w Dr. Polston or Dr. Shields who are Neurologists with an understanding of Dysautonomia. Dr. Jaeger sees about 20 new pts a week. He'll be the first to say that at CC they do a great job diagnosing but are not as strong on the treatment side. He did mention they were doing some research looking into cerebral blood flow and it's role in Dysautonomia. (I have not seen anything published about this but I will keep my eye out.) He has a vast knowledge of Autonomic Dyafunction and sees Dysautonomia in all sorts of shapes and sizes. His bedside manner is not as soft and sweet as Dr. Fouad but he is direct and very knowledgeable. He does have differing opinions about the mechanisms of autonomic dysfunction and specifically mentioned the names of 2 other doctors who have "theories" that he questions. One overall sense I had from the visit is his frustration with not being able to help patients like us more. I think CC is a great place to go for diagnostics- especially if you are wanting to rule out new things. And Dr. Jaeger is a doc who has a vast experience in seeing lots of pts with autonomic dysfunction.

I know this isn't the answer you are looking for but I have struggled greatly finding local docs who understand this and can provide any insight. For instance, I was at the cardiologists office today and he said, "I learn more from you than you learn from me." but the fact is he knows my heart and a lot about heart issues that I don't know about so when my autonomic doc (8.5 hrs away) suggested I needed a heart monitor to make sure there wasn't an "accessory pathway"- my cardiologist helps me understand wha that is and the different types of pathways- some of which can be concealed (not visible in an EKG). Funny thing is, I live in Tampa Bay Florida- where there is HUGE healthcare mostly bc of our elderly population- so you would think there was some doc here- if so, he/she is hiding under a conch shell. All my docs who understand Dysautonomia or MCAD are all an 8.5 HR or more drive away and it is well worth it. Of course the flip side is the cost of that- not just financially and logistically (of which both are huge) but the stress of travel on my body. Last week on the way home from Charleston I needed to stop for another restroom break. The previous couple of stops were hard bc I was so faint- just barely able to walk w/o help. About two hours away from home we tried to stop again and I couldn't stand or put any weight in my feet. I almost fell onto the asphalt pavement of the rest area after opening the door. My hubby picked me up and made a bed for me in back and I put a cover over my eyes and headphones in my ears for the remainder of the trip home. Couldn't speak in full sentences the whole next day. Travel is hard, but if I don't go I will be stuck with docs who simply can't help. I have 4 local docs (primary, cardio, neuro and sleep). All of which know my case and are willing to work w out of town docs. So when I looked for local docs I told them the long story of symptoms and asked them if they wanted to take on my case. Also, I would ask how many Dysautonomia pts they have experience with. Also, are they willing tom work w out of town docs. And most important, if you go for a first visit and they tell me things that are wrong (ie: " take this pill, you'll be back to driving in a couple of days" or "this is anxiety, take a Xanax and go see a counselor"- never go back. Finding a good team of docs is probably one of the most frustrating parts of this process. I wish you the best and will pray that you find the right doc(s) for you.

I'm not sure if others do this but I started my own chart a while back. Anytime I have a test result, specialists visit, stay in the hospital, etc. I always request that a copy be faxed to me. In some cases like the hospital I have to go down to their medical records, sign off and pick up in person. The lab also won't fax to me but each time I go see my primary I ask for copies of anything sent to him that we've reviewed. It really helps to have copies of all my records. Then, if a new doc needs my med records I just fax to them. Another side benefit is that in the last year I've found at least a dozen items, some small, like an abnormal CMV IgG result, and some large like being discharged from the hospital with Pancytopenia that wasn't reported to me. Keeping my own chart is key to me being the quarterback of my medical team.

Issie, I have emailed his nurse to find out how to participate. I'll post her answer here as soon as I get it in case others might want to participate too.

So it looks as if I am joining the ranks of the hyperadrenergic MCAD club. Still waiting on an official word from Dr. Afrin whom I saw last Monday and pending lab work but a few preliminary lab tests show several signs of abnormally high MC mediator activity in my blood along with an NE level drawn supine that was above the clinical standard for Vanderbilt's "hyperadrenergic" Dx that is supposed to be assessed upright. Of the 40 some odd symptoms of MCAD there were only two that I didn't have. (no problems w nails and sinuses) So here is what is interesting: - I don't have high BP- in fact it is quite low when I'm symptomatic (ie: 88/50) - I don't have flushing of the skin (I have other skin probs like episodic excema on my left hand and severe itching of my legs) And it appears to me that Dr. Afrin and Dr. Grubb have two very different estimates of the frequency of MCAD in the population. For instance Dr. G says, 12 out of 2,000 Dysautonomia pts. Dr. Afrin says, "There is evidence that MCAD Is a disorder with considerable prevalence And thus should be considered routinely in the differential diagnosis of patients with Chronic multi system polymorbidity of unknown cause.". (sounds like lots of POTS pts to me.). Below is a link to an article he recently published on MCAS along w a few other docs. I should also note that Dr. Afrin is a hematologist/oncologist who does not specialize in autonomic dysfunction but has several pts with POTS. In fact, Christy D is the one who referred me to him- thanks ChristyD. I'm hopeful bc for the first time I'm talking with a doc about a disease (mutation of a specific cell) that can be tested. (Note: I gave him two vials of blood to participate in a research study he is conducting to look for markers in the blood that indicate presence of MCAD. He is looking for 100 participants and he is measuring that against 100 healthy control samples.) http://people.musc.edu/~afrinl/MCAS_Primer/JHO_MCAD_Review_Final.pdf

B, I've seen several of your posts which have included helpful and interesting information/ input in the forum. I'm sorry that you are struggling on the financial front right now. Seems to me the health battle is so big that you don't deserve a double whammy. That said, although the graphics are pretty, and you, like me, enjoy looking for patterns/trends in the data- it is a "nice to have" not a "need to have.". I'd suggest skipping any expenditure on software bc clinically it won't help you. In the meantime I'd probably just pencil and paper it and keep notes on any trends I sense as I'm recording. If you really want software I just googled "free heart rate monitor software" and about 5 different free download options came up. Don't know if they include the ones you mentioned above but might be worth investigating.

Tracking my Orthostatic BP and HR has been very helpful for me as I have tried many treatments and watched empirically how the changes have played or not played a significant role in my progress. For instance, I have been able to prove Beta Blockers help temporarily, but do not help long term and that following exercise I frequently have very low drops in BP that Can cause me to blackout. I use the Omron blood pressure cuff (sells at Walgreens for $99- got it on sale for $50.). And I use "Hearttracker" an iPhone app that has been fantastic. (not sure if OT is available for other smart phones but bought it for a couple of bucks- well worth it!). It keeps my stats, shows graphs, can email either summary or detailed reports to myself or doctors. It also has a note section that allows me to make note of what is happening at the time- ie: following 20 mins light walking. On a tight budget u might not have a smart phone, but that is ok. You could easily create a spreadsheet in Excel to track it- or even a pen and paper spreadsheet. The data is especially helpful when working w docs because it is difficult for them to refute clinical evidence of trends in BP/ HR. I did daily morning Orthostatic measures for the first 4 months following Dx. The data is invaluable as I continue to see effective treatments.

Interesting this article came from Oklahoma City. I wasn't aware of a center there that specializes in autonomic dysfunction. Thx for sharing.

I'm also no where near but I want to help. Not sure how best but as you get closer to knowing details pls PM me and I'll see if I can help in some way.

I have leg pains and arm pains too but wonder if they are different/similar. Mine are more tingling sensations that result in dull deep aches. It is as if the blood is simply not flowing in those peripheral areas. Sometimes I'll wake up with legs that are "dead" meaning I can move them but can barely feel anything then th blood comes back in (like sharp needles) as I start to move. It is painful and a little scary. Twice in the last 2 weeks I have awakened w 2 dead arms. This same pain/ sensation happens frequently during the day. Sometimes when I move them it helps but sometimes it doesn't matter. Yesterday I had these pains all on the right side of my body.

Dizzy, thanks so much for sharing details about what is helping you.