Kellysavedbygrace

Great find. Interesting. Many of the cytokines listed are mast cell mediators and CRPS fits MCAS in terms of how it presents clinically. Wondering if the two aren't the same? Hmmm.

That's interesting- maybe my problem!,, cool. I'll look for your next post. take your time- no rush!

That's a great story. Rich, do you know which specific lab tests for AAG?

Also, did you know that the famous Country music legend, Roy Akuff, (Grand Old Opry- really big in the 40s and 50s) started as a pro baseball player? After fainting several times on the field he was hospitalized and disabled for a couple of years. He had Dysautonomia before they had a name for it. In his inability to perform "on the field" he began writing music and in his later years donated lots of hours to the Autonomic Dysfunction Center at Vanderbilt. He died at age 95 of CHF and has a street named in his honor nearby on music row.

I have been on Biotin supplements for a year. I have not noticed any negative side effects. It helps w hair and nails some. Interestingly after being on it for several MOS I had a comprehensive nutritional screen which showed Biotin as being "deficient.". So I must not be absorbing it well or my body must be using it too quickly. I've had bad hair problems since onset: hair loss, dryness/thinning and bad reactions to coloring. I'm not surprised at my hair loss issues and am surprised I haven't lost more bc my Prostaglandin D2 (mast cell mediator) is quite elevated. PGD2 is also associated w male hair balding.

I have had Issues with this since my Dysautonomia onset but suspect as someone else mentioned that it is more of an issue with chemical sensitivities/ reactions. (I suspect for me it is a mast cell activation issue.)

During my last hair coloring at the salon where they used the most sensitive product they have my BP dropped to 80/50 for 5 hours and was the startof another bad crash. No amount of salt or fluid helped raise my BP. I had the coloring mid day and that evening my nine yr old came in my bedroom and asked me if I was ok. I told him how I had a reaction to the hair color and that I was thinking I might have to go grey. He said, "no mommy. Don't do that. Just have your hair color appt at the end of the day and then you can go home and go to bed.". - so sweet.

This mama won't be embracing grey anytime soon but I will be sure to schedule a late day appt and a day or two of recovery afterwards.

Stems are bitter and have fewer micronutrients than the dark leafy green parts.

J,

I've never been to Mayo, MN but know they do have some autonomic testing capabilities that not all autonomic testing facilities have (ie: Thermoregulatory sweat test, Hemodynamic lab, etc.). I don't know anything about Baylor but I'd suggest looking into which tests you have not had done that they might have at Mayo and make sure you get those scheduled during your stay- if you think they might provide further insight into your case. Also, if you suspect changes or just want confirmation of your previous testing that second work up might not be a bad thing. (ie- for me having a second QSART was helpful because I suspected the first one was a fluke result.)

I've been to both CC and Vandy. I've had two full autonomic workups. I've personally met with and had consultation with 6 different doctors at these two centers that specialize in autonomic dysfunction. I've also had a full MCAS workup and consulted with 2 top Hematologists in the country (in two different locations) re: my MCAS. For me, getting these "second diagnostic workups" have been really helpful- so I would encourage you to identify what would be most helpful for you in the "repeat" of those tests so

that you don't just have the sense that your time has been wasted but that the diagnostics are purposeful.

Also, if I were going there (this is just me- but since you are going into med school this might be of interest to you too) I'd like them to give me their assessment for where I am on their Autonomic Dysfunction Assessment Scale as well as details about how and what they measure. (You probably know earlier this year they published the "Compass 32" Assessment tool for use by other physicians. On site, however, I believe they use a more detailed assessment tool that has more like 70-100 variables. I'd be interested in looking into that especially if you are thinking of specializing in Dysautonomia in your future work.

I know you know this but it bears emphasizing due to your question- any of the big medical centers (Mayo, CC, Vanderbilt, etc.) are excellent in the area of diagnostics and research. But, they are not as strong in the treatment side simply because they usually don't follow patients for long periods of time.

As for your treatment questions- I'd put them in writing and fax to each doc you will see in advance of

your appointment. That way they will have a heads up that you want to focus your time in meeting with them on your treatment questions. That said, and with all due respect of the big med center docs, I'd look for another autonomic dysfunction doc who treats patients in the field and follows them on a long term basis to get a second opinion on treatment plans they recommend. I've found this to be particularly helpful in selecting the better class of drug in my case by taking recommendations from (experts in diagnostics and research) to Dr. Thompson who is an expert in treating Dysautonomia pts day in and day out and following them on a long term basis. For instance, at Vandy, Provigil was recommended for my fatigue but after discussing this recommendation with Dr. Thompson, I learned some pretty helpful insights that changed my mind about what drug I should really be on. He said that Provigil seems to help in about 20% of his patients but that he sees more improvement in patients who try a stimulant drug such as Adderall or Methylphedate. These stimulants help not only with the fatigue but more importantly they are strong vasoconstrictors and improve circulation in addition to fatigue. This discussion was so helpful. I'm on Adderall. I would not be on it today w/o the recommendation of Vandy to try Provigil and the guidance of Dr. Thompson to try Adderall first. This has been the most helpful pharmaceutical treatment I have tried to date, by far.

Above all else, I'd suggest you enjoy this experience in the halls of greatness at Mayo. What a blessing that you get to go and experience world class health care in the presence of some of the finest doctors in the world.

Actually most of your symptoms sound similar to mine when I am crashing just to different degrees. The only symptoms you mentioned that I don't have are the vertigo (although I make up forit plenty in pre syncope and greying out) and fine motor skill issues.

When I was first diagnosed I wanted to rule out PAF and MSA. You can do that by going to one of the major medical centers that does autonomic reflex testing. They'll run you through a battery of tests to make sure your autonomic reflexes are in tact- ensuring your hemodynamics change when stressed by external stimuli. In my case, although my autonomic reflexes are intact, my responses are consistently exaggerated - suggestive of hyperadrenergic Dysautonomia. If they are not responsive enough that is more suggestive of a progressive Dysautonomia.

I get pretty severe crashes about 50% of the time- when I'm crashing I struggle to speak- can usually say words but not sentences, (so talking is very difficult) walk, put any weight on my feet, process any kind of data, breathe, etc. I suspect my crashes are caused by mast cell degranulation that is releasing chemical mediators such as histamines, prostaglandin D2, NE, etc. (probably many more we don't even know about.). For me these crashes can be triggered by something external (stress, exposure to chemicals, upright too long, etc.) but they also appear to happen spontaneously. I've tried my best to get a handle on the cause and effect but so far I have been unsuccessful in stopping the crashes no matter how little external stimuli I encounter.

It sounds like inn your case you might consider going to Mayo, MN; Cleveland Clinic, OH; or Vanderbilt in TN. Any of those can help you rule out the MSA. If it is ruled out you might look into Mast Cell Activation. There is a simplified article in the recent DINET newsletter that addresses it. Feel free to PM me if you have questions.

Hang in there. Dysautonomia is tough but getting down to what is causing your symptoms is really important and it sounds like you are headed in the right direction by wanting a better diagnosis.

I have some symptoms that are more pronounced on one side although I have many bilateral symptoms as well.

Left side prominence:

Myofacial pain, dental pain, ear drum spasms, migraines, chest pain and parasthesias in my arms. Muscle spasms/ tremors in arms.

Right side prominence:

Circulation, pain and parasthesia in leg. Muscle spasms/ tremors in leg.

I think there was a lengthy thread about this about 2 MOS ago. I've had both recommended to me and I plan to trial Clonidine soon- it's just down the line on the list of things to try and I'm trying to only make one change at a time.

Also, you might PM Kitt. She has tried both and I think she has had more success w the Methyldopa. When discussing w Dr. Thompson he recommended I try Clonidine first as he has witnessed more pts having success with it but he also said some do better w the Methyldopa.

The power of suggestion! Lol

Funny. Potatoes get such a bad rep and even on the site link below potatos are discouraged for those with nervous system disorders and those with joint problems. I have both so as I'm reading this I'm questioning, "Oh no! Should I stop eating potatoes?". Then further down it explains how these alkaloids cause problems....

Hah! That's what my Mestinon does! Can u believe?

Te discussion about calcium depletion's interesting but I don't seem to have issues with that so I wonder if calcium is something to be monitored for those of us on Mestinon.

Also, as a weird side note, while an inpatient at Vanderbilt, On their special diet I was served potatoes at least one or two times per day.

My top 5 ways to eat a potato:

- baked w a little butter, sprinkle of Parm cheese, scallions and Lots OF Salt!

- homemade hash browns- w butter, onions. Peppers and lots of salt and black pepper

- red potato salad w light mayo and onions and celery

- whipped with a little milk, a little butter and a moderate amount of salt

- boiled gold plain- served w a little butter and salt

Here's the link for you potato lovers:

http://www.whfoods.com/genpage.php?tname=george&dbid=62

I'd be interested to know more about what is going on in this case. What is the problem prior to weaning off? Why was he put on it? Did it help those symptoms? What, if anything will be used to address those original concerns. And one more thing, How much did he take before?

The reason I ask all these things is that I was originally prescribed this in a low dose .5 mg at bed to help w oscillations of the heart and to gently relax the CNS. It is a med that I've tolerated really well at that dose. It has also improved mysleep. What I didn't know is that our Mast Cells have benzo receptors which help to stabilize the cells so my Mast Cell doctor wants me to add two additional doses in the day time and work up slowly (starting at adding .25 2x a day in addition to my .5 at night until I get the side effect of sleepiness in the daytime- ideally he'd like me to get as high as 1.5 3x a day.).

So this makes me wonder is "weaning off" the right approach or "tapering down the dose" the right approach?

I did get off Clonazepam for 2 weeks while at Vanderbilt. I had no noticeable side effects other than it was a little harder to fall asleep. But maybe that was just because I was in a strange place.

Welcome to this forum. I'm so glad you are here.

No, you do not sound pathetic and I can totally relate to where you are. At times in this journey I've had problems with sexual function and it makes sense bc it is controlled by the ANS. I do believe the worst part of this journey is knowing that there is something wrong and the doctors can't help. I really agree with all above - great advice. I am with Issie and ChristyD on ruling out hyperadrenergic POTS with Systemic Mast Cell involvement and it sounds like you've already ruled out Pheocromocytoma but having a full workup at a major autonomic lab would probably give you peace of mind.

You may also want to watch the "Changes: POTS" Video- there is a link on one of these forums- just search for video in "all forums". It is very educational when you are trying to get your head around Dysautonomia.

Keep us updated w your progress.

Ditto Rich! I was just thinking about ways we could improvise and wonder if the O2 monitors they use in NICU could be adapted for us to look at some degree of O2 levels in the head. (Even if we could it really wouldn't be quite the same as what you are thinking but may give a different measure than our peripheral O2 which would be clinical evidence to dig deeper.)

Just had a really bad episode w breathing. 15 mins after lunch out w my son I started having a hard time breathing and thinking. Don't think there was really significant sensory overload as it was a quiet small restaurant but suspect it was a reaction to the food.

Half a dozen times after I would have to go into these conscious breathing patterns bc my involuntary breathing simply stopped. It is scary. After an hour lying down I was still struggling to breath but O2 level in finger was fine- quite sure there would have been a different cerebral measure if we could get at that.

I'm now in bed crashing. Still O2 hungry but not thinking about the emergency room anymore. I did take a Clonazepam - which is a benzo and since the mast cells have benzo receptors this drug helps to stabilize the mast cell. I suspect mast cell issues likely compound my breathing issues.

I'd recommend discussing w your autonomic doc. Might consider trying high dose antihistamines prior to the procedure to combat natural histamine release that occurs in dental surgery. Might help to minimize your reaction. This was recommended by my neurologist before I even knew I had mast cell issues.

I have been on Pyridostigmine (60 mg 2x a day) since March 2011. It took a while to build in my system and it causes no noticeable side effects at first. I did not notice it's benefits or side effects until I stopped taking it.

It definitely helps w the pre syncope feelings as well as fatigue. When I stop taking it these return more prominently. I also notice that it reduces my sweat ability and increases salivation. I have no stomach issues with it and only once did I note that Euphoric feel- it was when I was having a good day (low symptoms) and 15 mins after taking I was giddy for about 30 mins. This was only one time back in December.

As a side note I learned yesterday that potatoes (a nightshade vegetable) are high in alkaloids that inhibit cholinesterase, the enzyme that is a catalyst for acetycoline. This is exactly what Mestinon does. And interestingly I've been craving potatoes for the last year. I thought it was their high potassium content but now I wonder. So how many potatoes does it take to equal 1 60mg Mestinon tablet?

Hi Puppy. How did it go?

I am planning to post a thread soon about my exercise journey this past year. And I am so thankful to have been working with nurses in cardiac rehab and then with a personal trainer who is a former PT. Honestly, we are still trying to figure out the best exercise regime for me. During this journey Ive learned that:

- movement is good. (the skeletal muscle pump helps the body circulate blood which is helpful)

- exercise is good, but there is not a one size fits all approach.

- to develop a good exercise program you have to be willing to pay the price- rest, and recovery before, during and after.

- the degree to which you are paying a price is often a good measure if you are pushing yourself too much.

- a good exercise therapist will encourage you to slow down, reduce your push because we tend to push ourselves too much.

- it is important not to compare yourself to others, just compare yourself today to yourself yesterday.

- POTS pts who also suffer from CFS should be aware of and look for signs of Post Exertional Relapse/Malaise

- use a HR monitor

- drink lots of fluids before, during and after (about 4oz every 10 mins)

Rama, you amaze me with the breadth of your knowledge. Interesting background info about antihistamines nonetheless antihistamines primarily block vasodilation. Which meds are you referring to re: increasing central dopamine? And out of curiosity which meds are you on? If any.

I have a vitamix and I use a nut milk bag to eliminate the fiber when I green juice. (w my gastro issue the fiber is hard to process but I really need the micronutrients.). It does take a bit of planning and work and when I am fatigued I just don't get it done but I learned a helpful tip from Rich a few weeks back that has really helped:

ELIMINATE THE FRUIT!

(well maybe not all- for taste, but most.)

I was having more nausea after juicing and didn't know why. I listed my ingredients and Rich pointed out that most of my ingredients were fruit. Well, the sugar in the fruit immediately turns to acid once it hits the stomach- no wonder I was having such an issue- and since I was eliminating the fiber I was getting too much straight sugar. I do use organic apple juice to process this green juice so there is some sweetness but have found the following recipe to work great:

- big bunch of kale (stems removed)

- handful of parsley (stems removed)

- handful of romaine

- couple stalks celery

- 1/2 cucumber

- thumb sized piece of Ginger

With a cup or two or apple juice. It still tastes good to me- not nearly as sweet. And because it is low in sugar it is much easier to press through the nut milk bag- saving my energy. Clean up is almost as easy as a nutribullet. I love my Vitamix. (there is a recent thread about "Vitamix" on this forum for more info.

So glad you found this forum. Welcome!

It sounds likely that you do have POTS but as you pointed out you need to get a doctor to diagnose it. Unfortunately most doctors are not familiar with it and you are not alone- most everyone here on this forum was originally told they had something else- anxiety, fibromyalgia, etc. Before discovering Dysautonomia. Sounds

Ike you are headed in the right direction. I'm not sure what to say about who to see near Ontario but if you are willing to drive a bit, get on an appointment many months in the future and go to the states you could get a workup by Dr. Fred Jaeger at the Cleveland Clinic in Cleveland OH or Dr. Blair Grubb in Toledo OH. (Check the listings of doctors on this website- those are just two I know of that are closer to you. I highly recommend both.)

As you may know the diagnostic criteria for POTS is a 30 bpm increase upon standing - best diagnosed using a Tilit Table Test (the gold standard) but it has been documented in research out of Vanderbilt that the poor man's "stand test" is nearly as effective. That said, there is also evidence of variation re: the time of day in which you do this Orthostatic test. Typically the rise won't be as marked later in the day so it is recommended that the test be done as early in the morning as possible. I'd say if you have three mornings in a row where you have a 30 bpm documented increase or more you have enough evidence along with the information provided on this site to take to any doctor.

Another thought is to find a younger doctor who has recently been trained at a major medical center. Most will have at least heard of Dysautonomia. I have found a local research doctor who knew nothing about POTS but was willing to take my case on. I brought the info about POTS to him and asked him if he thought I had it- he said he didn't know but would research it. He came back the next morn and said, "yes, I think you have POTS.".

It is likely that if you want good medical help for Dysautonomia you will need to travel. I have travelled lots to see doctors and it has really helped. I know some cannot afford to do that but if you can I would encourage it. I regularly travel to Charleston SC and Pensacola FL to see my two doctors. One specializes in Dysautonomia, the other specializes in Systemic Mast Cell Disease. Both are more than 8 HR drives from my house. I'm thankful to have a local doc who is willing to work with them and others.

You'll also find a wealth of help and information here on this forum. I have found more helpful information here than on any other site. I hope this finds you having a good moment. Blessings, Kelly

I just posted on another thread (Rama's - vasoconstrictor meds list) about Adderall and Antihistamines. Wish I could cut and paste but might look at that for more info.

A couple of notes re: Adderall and Antihistamines

Adderall- not sure what you mean Ram when saying "no selective vasoconstrictors." I was told by Dr. Randy Thompson that the number one reason I should try Adderall is for the strong vasoconstrictor effect. (The secondary reasons were: to stimulate circulation and improve fatigue.). I have found this med to be by far the most helpful on good days and I suspect it is the vasoconstriction that helps the most. As a side note, my circulation issues have been greatly improved since starting this med which I was very reluctant to try. Took me about a year and a half to be willing to try it as I don't like taking drugs that are known to be habit forming and I struggle at times with palipitations so I was fearful this would make my heart problems worse. I have not had an issue with either of these concerns. (I am taking 10mg 2/3x a day.). I would highly recommend trying Adderall for anyone who is looking to achieve significant vasoconstriction.

Antihistamines- these do not constrict the blood vessels but they do improve circulation by decreasing vasodilation in some patients who have histamine release which occurs near the blood vessels as in patients with MCAD. Histamine, the most well known chemical mediator released by mast cells(allergy cells), is a well known vasodilator. So the way antihistamines work is simply blocking the histamine effect thereby decreasing vasodilation. Although I have no sinus problems or acid reflux issues I'm on high dose Claritan and Pepcid. These H1 and H2 blockers have been the second most helpful med in my current treatment plan. The first week I started them it was my first experience of significant relief from brain fog. As w/ the Adderall above, they only seem to help on "good days.". All that to say antihistamines would have no effect on vasoconstriction unless there is an underlying histamine problem.

Outside of exercise, Adderall has by far had the most helpful treatment for me.

It only works on days when I'm not crashing but it is a strong vasoconstrictor, it stimulates circulation and helps with energy. I was worried about taking it because I often get bad palpitations. I started it at a half dose and am up to 10 mg 2-3x a day. On non crashing days (50%) I can drive on two or three lane roads for short periods of time, can handle more outside sensory stimulation, think more clearly and have greatly improved circulation.

The high dose antihistamines have also been helpful in this regard but the Adderall is stronger. The combination of both has been good. I'm still crashing but on my non crash days I'm more functional.

Nuvigil was also recommended for me but I went with the Adderall bc of both cost and Dr. Thompson's recommendation that he's seen more pts have improvement w Adderall or Ritalin than NuVigil or Provigil.

If you tryit let me know how it goes!