MAYO CLINIC & 17yr old diagnosed with POTS

[MomOfPOTS]

Good Afternoon,

Wow! This page has been tremendous help. I am the mother of a 17yr old that has been recently diagnosed with POTS. We go to Mayo Clinic on Sept. 13th to see what they plan to do. Currently, I must say I am glad I am a nurse because I understand the entire receptor~transmitter terminology etc. However, no matter how much education I have it seems when my child becomes ill I then become panicked and lose all ability to help. Except research! I am good at researching things. Ok so here I go:

Daughter was diagnosed with IBS 5yrs ago at age 12. She has been on Elavil and Align consecutively with good and bad days. We had our fair share of tests and everything coming back normal and then given the IBS diagnosis as a way to just have a name I guess. It was a long year of tests and I just want her better now that we have been given a new diagnosis of POTS, I am worried the same thing will occur again with numerous tests with normal findings. She has already had numerous Normal EKG’s. Normal bloodwork, but I am not 100% certain all they checked for with the bloodwork.

Now here’s the interesting part that I connect with 100% after watching the POTS video’s Part 1,2 & 3. My daughter has had soo many different symptoms at different times and gets the same answer that all is normal and will subside with age, but it seems the issues come and go with no cause. The following are symptoms she has had: All IBS symptoms, Chest pain that takes her breath away and she has to literally take small breaths up to 5 minutes (all tests were normal and we were told she could be having panic attacks), Chronic major stomach pains (all tests normal), pains near the gallbladder (ultrasound normal), Continued on and off symptoms of food poisoning with severe diarrhea and lots of bile (IBS related we are told), Restless leg syndrome (told it is her growing), Insomnia on and off (Told she is just anxious) , Flushed red face and feeling warm (told it’s normal), On and off TMJ pain (told it’s because she clenches her teeth, they wanted to have her wear a $2,000 mouth guard, but she has a severe gag reflex), Gag reflex very bad (told it’s normal because her mouth is small).She has also had to go to Behavioral counseling because we are told her anxiety could be from holding in feelings (I really believe now that my daughter was being honest that emotionally she is fine, but can’t stand her stomach). hand tremors off and on (told they aren’t sure).

Recent new symptoms that ended us at the ER 2x and now given the POTS diagnosis:

standing, sitting, lying down out of nowhere she gets dizzy, head has pressure, nauseated and everything doesn’t spin, but it get’s blurred, heart races, she then goes into fight or flight mode and this all takes place and lasts about 5-10 minutes and then she is extremely tired and fatigued for the entire next day.She says her head feels weird after it happens. She gets sharp shooting pains in h er head out of nowhere. Seems to happen more in the morning time. They did the Poor man’s tilt test with Orthostatic blood pressure and HR. Her BP remained fine, but her HR skyrocketed.

She runs out of breath and can’t seem to catch her breath after just walking stairs. She isn’t overweight yet, but is 5’8 and 145lbs.

She seems to be hungry alot more now and has shot up in weight and height in the last year causing stretchmarks when before she could barely keep weight on at age 12 when IBS symptoms put her in the hospital at a mere 70lbs.

Everyday it is something more and I am feeling hopeless. She’s a great young lady and is going to graduate with Honors and I just want her to enjoy her senior year. I can see that this newest POTS stuff is really taking its toll and she feels like she is a walking problem or is just going crazy, but I reassure her I believe her, but the sad part is that I haven’t been able to find her relief.

How do I approach the doctor with the new Parasym Plus? I am a nurse and I know the medical field and I am not sure how responsive they are going to be. What specific tests should I have them do? And should I go ahead and start her on Zantac/Zyrtec? She has taken Zantac before because of IBS and heartburn. I just want her to feel better.

Thank you for any advice you may be able to give. I have watched all videos of POTS and Driscoll’s Theory in the last 24 hours and I have read many of the posts on here. I know we are all different, but I need to get my daughter some relief.

Thanks,

Charlene 🙂

[RossiRossovich]

Hi,

I am sorry to hear your daughter’s story, as she has experienced a lot of the same symptoms that I have these past 4 years. I am new to the site as well. Last week I came across an interview w/ Dr. Driscoll and was shocked to see her proposing the very same ideas I had considered myself: idiopathic intracranial hypertension (IIH), mast cell activation, vagus nerve dysfunction, and insufficient parasympathetic response. I had even considered acetazolamide, as she recommended. I think I gave up on the theory a couple years ago based on a number of negative opinions from doctors leading to the belief that mild intracranial hypertension was not possible w/out papilledema. To give you some background, I was going back to school for my Ph.D. in pharmacology and cell biophysics. Two months before I started, I suffered what appears to have been a cerebral vasospasm (CV) followed 3 weeks later by a septic elbow where my immune system failed to properly respond. As Dr. Driscoll mentions, POTS patients seem to have some type of genetic predisposition w/ trauma or infection serving as the trigger. Despite issues, I tried to start the program anyway. The result was I quickly fell apart and had to take medical leave and eventually drop out. It has been 4 rough years, but I am doing much better now. It is the result of my own search for answers, refusal to quit in the face of animosity, and being lucky enough to have a cardiologist and psychiatrist willing to think outside the box and prescribe different meds based on sound arguments.

The reason I mention all this is your ability as a good researcher and your understanding of medical terminology will be extremely important in getting your daughter better. The first thing you need to do from reading your post is find a doctor willing to prescribe Acetazolamide. It does not have to be a neurologist or someone from Mayo Clinic. Dr. Driscoll’s book reminded me of my own past thoughts concerning the possibility of IIH. A week ago, I presented a strong argument to my cardiologist as to why this made sense and he agreed to try it and see if it would help. After suffering from migraines, mainly atypical, for the past couple years; I have gone a whole week without any type of migraine or headache. I had a lot of side effects w/ the first dosage, but almost all of them quickly resolved.

I have been going to Cleveland Clinic Neurology since 2014, which is one of the nation’s top 5 neuro institutes. Every case is different, as are the specialists themselves, so keep an open and positive mind towards your trip to Mayo. At the same time, prepare yourself for the possibility that you won’t get all the answers and help you are probably expecting. I say this because Mayo is the top rated neuro institute and thus your expectations are probably very high. My experience w/ some of the nation’s best neurologists, as well as neurologists in general, is that there thinking can be too black and white. The numerous and diffuse symptoms don’t fit neatly into any diagnosis. I have had an unbelievable amount of different blood tests run and MRIs, which basically all came back normal.

I am curious about the teeth grinding and hand tremors off and on which I also experienced. I had a NM Brain Tremor SPECT w/ I-123 done. The only thing which can be diagnosed from it is Parkinson’s Disease, which was negative. Yet, the results were not normal. Tracer uptake in the caudate head and anterior striatum were asymmetric. The right side was normal, but the left showed Grade 1 loss of Dopaminergic Neuronal Terminal Density. I am not worried that I have Parkinson’s or will later develop it, but this abnormality can’t be discarded just because we don’t know what it means. Dr. Fernandez, the Head of Neurology at Cleveland Clinic, is a nice man and world’s expert on Parkinson’s Disease. We have not always seen eye to eye, but he has been willing to listen and reconsider and even alter his impression.

I plan on messaging him tomorrow about Acetazolamide and the clinical significance of the results so far. A strong case can be made based off prior med changes as well, that IIH was the culprit. My psychiatrist agreed to prescribe Mirapex prior to my first visit to Clev. Clinic for my hand tremors. The initial results were amazing in relation to my other issues, which I later figured out were the result of its vasodilation properties. My cardiologist pulled me off Altace for blood pressure a few months later and cerebral blood flow and arterial pressure must have increased resulting in further improvement. The Head of Neurology, Medical Director, and one other world class neurologist all diagnosed me w/ atypical migraines but based on my meds could offer no thoughts on how to treat it.

I will try to add some more thoughts tomorrow. It seems like a number of the issues you mention are resulting from episodic cerebral hypoperfusion and resulting oxygen deficiency. Acetazolamide might not fix everything, but it should prove to be very benefical in significantly improving or ameliorating many of the symptoms. Best of Luck. Take care. Matt

[Dr. Diana]

Hi Charlene, I’m so sorry that your daughter is dealing with all of this. 🙁 I wanted to address one of your questions about Parasym Plus and approaching your doctor about it. Because there is no blood test for low acetylcholine (this must be recognized by symptoms), you may want to review the symptoms of anticholinergic poisoning to see if your daughter is headed that way. Honestly, just fatigue and/or chronic constipation may be sufficient to suspect it. Be sure to have her take 2-3 capsules on an empty stomach first thing in the morning (and try to keep her stomach empty for about an hour). All ingredients are “GRAS” (Generally Recognized as Safe) by the FDA, so there is no fear of “overdose” at these levels. The only side-effect that may occur should she not require a boost in acetylcholine, is increased cognition. My husband takes it every day just for that reason (he is not ill)! My kids take a bit extra around finals time for the same reason. If you have any questions about the symptoms of low acetylcholine, they are in this presentation: http://prettyill.com/videos/watch/pots_what_have_we_been_missing_part_2 Hang in, my friend!

[RossiRossovich]

Hi Charlene,

I need to apologize regarding the I-123 Spect Scan, in case it caused you any additional worries. I have been through a lot these past 4 years and w/out answers from the medical professionals, sometimes I forget what I figured out made the most sense on my own. As cerebral vasospasms (CV) often resolve completely on MRI w/in a few months, my past thoughts were that this test was able to show the resulting damage from the CV I suffered. I did not have my first MRI until almost 1 year later when any damage would have resolved.

This statement did lead me to an important test I would press for while at the Mayo Clinic to justify the use of Acetazolamide. Of course, the problem w/ imaging is that it is just a snapshot in time and intracranial pressure could be normal. I am not familiar w/ these tests, but it appears from brief scanning that Acetazolamide reactivity as part of the test will overcome the issue of time and pressure variances in detection. A couple different radioactive isotopes can be attached to the proper tracer compound, including I-123 to an amine, to measure regional cerebral blood flow using SPECT. PET scans can be used as well, but I was never able to even get a regular PET ordered. They are normally used to quantitatively detect major cerebral artery occlusion. (Quantitative Measurement of Regional
Cerebrovascular Reactivity to Acetazolamide Using 123I-N-Isopropyl-p-Iodoamphetamine Autoradiography with SPECT: Validation Study Using H2 15O with PET, Ogasawara et. al., J Nucl Med, 2003; 44:520-525 Full PDF) This type of scan has also been used to detect cerebral low-flow regions in migraine, which is why it should be able to detect idiopathic intracranial hypertension (IIH). (The influence of acetazolamide on cerebral low-flow regions in migraine an interictal 99mTc-HMPAO SPECT study, Schlake, et. al., Cephalagia, 1992; 12,5:284-288 Abstract Available) This was from a cursory search of Google Scholar. You can probably find articles more appropriate w/ a little searching.

I feel based on your daughter’s symptoms and especially the newer ones that proving intermittent cerebral blood flow issues resulting from IIH and getting prescribed Acetazolamide as a result would be the most valuable thing that could be done for you at Mayo. Dr. Sandroni is the big name at Mayo who’s research focuses on POTS, but they have other experts as well on POTS whose research is just focused in other areas. I imagine your daughter will be having tilt-table, thermal sweat test (TST), QSART, and EMG as part of the autonomic workup. TST is only available at Mayo and Cleveland Clinic.

To add to Dr. Driscoll’s post about anticholinergic poisoning, Elavil (Amitriptyline) has pronounced anticholinergic effects. I am not sure if your daughter is being prescribed it for migraines or restless-leg syndrome, but what should be done in relation to this medication is something which should be discussed w/ the specialists at Mayo. The autonomic neurologists will be familiar w/ this type of drug, as they are used at times for a specific class of POTS patients w/ I believe either orthostatic hypotension or low blood pressure. Do NOT suddenly stop this type of medication. I know you are a nurse, so I write this for others who might be reading the post. The withdrawal symptoms of drugs working on the reuptake of serotonin and norepinephrine can be very harsh. It is very likely that without the addition of Acetazolamide, your daughter will develop severe migraines due to the vasoconstrive effects of the drug. The autonomic neurologists at Mayo should have a better understanding of the interaction of the drugs w/ POTS and how to proceed. Since Amitriptyline belongs to the class of older tricyclic anti-depressants, other factors have to be considered. Patients especially teens need to be monitored very carefully if a drug like this is tapered off of for suicidal thoughts.

I almost didn’t want to address this last issue because it just adds to your confusion and concerns. At the same time, I felt it important to make you aware of this drug’s anticholinergic effects. What to do about the drug in the face of these other symptoms and withdrawal issues becomes very confusing and complicated. Any medication has positives and negatives, risks and benefits associated w/ it. The answer on how to proceed is not black and white, thus why I would defer in this case to the judgement of those at Mayo. One thing about these type of meds is the prescribers, be it family physicians or even psychiatrists, often do not know how to properly taper someone down and off this type of medication. The drug companies suggestions in the prescribing information are way to fast. The specialists at Mayo may feel the benefits outweigh the negatives and want to keep your daughter on the medication. You never want to make multiple drug changes at once anyway, so getting her on Acetazolamide should be your top priority. Hopefully if they want her to taper off the drug later, they can give you a good plan on how to do it as safely as possible over an extended period of time.

My last bit of advice on the SPECT scanning is to do your research now before you go, find a couple of the most appropriate articles, and print them and take them w/ you. Using the literature to support your arguments is personally what I have found to be the most productive approach w/ the specialists. Good Luck. Take care. I am curious to hear how your trip goes and will try to answer any questions you have beforehand to the best of my ability. Sincerely, Matt

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