SarahA33

welcome!!

Welcome everyone! Happy that you've all joined our community!

Hi there,  I haven't taken this medication before so I can't comment on side effects or benefits. But it sounds like you did get some benefits that were really positive for you, despite the issues with the feeling cloudy. I hate that feeling, its the worst. Hopefully, these are side effects that will pass after a few days. I know it's been a huge help to many people for digestive issues and temperature regulation.  If you decide to take it today, I hope you have a better day!

Hi there, welcome to DINET,

Here is some school information for you, I'm not sure if you are familiar with it: A 504 has to be obtained for him. Since your child has been diagnosed with POTS/Dysautonomia, legally by federal law the public school system is required to provide him with an educational plan that that is appropriate and least restrictive, due to the fact that he has a chronic condition. This provides him protection due to his medical condition, like issues related to the fatigue you mentioned - perhaps he can only handle classes for half of the day, cannot attend physical education classes, has to have permission from his doctors to carry around gatoraid and water, snacks, etc. ,  Allowing him to leave a few minutes before the next class would start so it could allow for extra time to get there, Teacher's can start "systems" for missed for school work if there are extended absences - perhaps hiring a routine tutor so he doesn't fall far behind, educating the school nurse on pots and allowing him to come take breaks when needed.   There are fantastic, informative articles and videos on this topic written by Dr. Blair Grubb and his NP, Beverly Karabin, POTS guru's, that might be something really worth looking into. I believe the series is available on the Dysautonomia Youth Website, you can also find a lot of information there, too. Take care!

Hi Michele, Sorry that I don't have any answers for you, but I went through some past topics that may be helpful. If you'd like to do more yourself, the search box is in the upper corner. Good luck to you. Sarah

http://forums.dinet.org/index.php?/topic/12502-mitochodrial-disease/#comment-114500

http://forums.dinet.org/index.php?/topic/26522-carnitine/#comment-250920

http://forums.dinet.org/index.php?/topic/25264-creatine-helps-mitochondrial-disease/#comment-236875

http://forums.dinet.org/index.php?/topic/15071-got-a-call-from-mayo-clinic-geneticist/#comment-138124

Relax, thanks for coming back to share how well you are doing. You gave a lot of hope by sharing your story. Like you said, when you were on the forums every day hoping to find something to help you, just a positive story of recovery makes all the difference. I am so happy that your doing so well!

Marsha, like Katie said its great to read you are so improved with your treatments too. Glad you came back to tell us how positive things are going. Some become close here on dinet, and the forum serves a purpose while we need it, but then a lot of members get better and the forum no longer serves the purpose it initially did. That is my theory anyway and I am so happy for them if its accurate.Like you Marsha I remember a great deal of the members, especially when I first joined.

yogini, happy for you too that you have improved such a great deal. Its nice to read in posts that a treatment or exercise worked or didn't work for you, but your functional now.

And Rick, I hope you do share your recovery story here one day!

Hi there,

Very sorry to read you've had a rough time. Are you near any of the major clinics-- Cleveland, Vanderbilt, Mayo?  Not sure if traveling is an option for you, but just wanted to suggest this for the value of testing and specialists. I had my diagnosis reconfirmed at CC (hyper) and was also diagnosed with Hypovolemic POTS. I was told by my POTS specialist that its not uncommon for subtypes to overlap. 

What I've found most helpful is to suppress the adrenaline.  I was going to suggest Clonidine as well as Propranolol. I've had great success with both, as well as Ativan for the palpatations and tremor. Very pleased that Clonidine was useful for you! Sorry to hear of the swelling ,though. I can relate to the " trade off feeling "-- as it can exacerbate my Raynaud's.  Thought to share something I recently learned after having taken this med for 4+ years, that it does expand blood volume, which is a bonus. If the swelling becomes too problematic with the oral route- maybe you could talk to your dr. about the clonidine patch? I wonder if the absorption through the skin would make a difference in side effects or not.

Propranolol is rx'ed for many POTS patients and I've found it to be the most effective w/ least amount of side effects. Others simply cannot tolerate it.  There's been a lot of discussion on the forum about this. http://circ.ahajournals.org/content/120/9/725.full  This is a paper written by the doctors at Vanderbilt, Propranolol Decreases Tachycardia and Improves Symptoms in the Postural Tachycardia Syndrome,  It is from 2009 but they are currently doing an updated study on this. Good Luck to you, and sorry about the IT issue putting a damper on things!  Sarah

Just curious because I'm not familiar with this area - How do you know if it's adrenal fatigue (or something else) if labs are normal?

Oh I am so sorry. I know she'd had an EEG, but have any of the doctors mentioned long tern in patient monitoring to the neuro unit? These events could be captured on video and monitors. They could also draw specific types of labs as they're occurring. I'll keep thinking.. xoxo

Hi, Tom,

I don't have any experience with Dr. Bellow, sorry. However, I wanted to add that many POTS patients experience something called "Coat Hanger Pain" in the neck - specifically in the suboccipital and paracervical regions. (Head/neck/shoulders region) that is usually related to Orthostatic Hypotension, but not always.

http://www.ncbi.nlm.nih.gov/pubmed/22711896

http://forums.dinet.org/index.php?/topic/12979-coat-hanger-pain-neck-pain/

Oh no! I'm sorry that this has started occurring.  I don't have much to add - just wanted to let you know I'll be thinking of you guys - and also, maybe a visit to her neurologist might be something to consider. There is a Nerve Conduction test, Electromyogram (EMG) that measures muscle activity at rest and during contraction. Might be helpful if the x-ray doesn't show anything. EMGs test for inflammation of muscles, pinched nerves, causes of twitching and weakness. I had this done about 8 years ago because of weakness. 

Wishing you all the best!

Hi there, welcome to DINET!

I really feel for you in regards to your cognitive symptoms - Brain fog by far is one of my worst POTS symptoms.  I struggle with a lot of the same things you mentioned - memory and the fuzziness you described, along with a spacy feeling are my biggest complaints. Some days are better than others, and fluids, exercise, and compression help a great deal. I was prescribed Provigil, but unfortunately had to stop it because it made me feel "wired", or hyper. But it did help with some of my cognitive symptoms. This is an article written by a researcher at Vanderbilt on the topic: http://forums.dinet.org/index.php?/topic/27481-cognitive-dysfunction-in-pots/#comment-254746  As Katie mentioned, it's not uncommon for primary doctors to have this kind of response, I know it's frustrating and disappointing on our end though. My PCP prescribes it, however, my POTS specialist recommended it in his report. I doubt she would have without his suggestion.  Do you go to the CC still?  My POTS specialist is there and I've made great progress with my POTS.  Good luck on your Tilt Table and take care!

Hi there -   Are you taking Gabapentin (Neurontin) for migraines? Wondering if  that has that been more effective vs the other migraine medications, such as abortives like Imitrex? If so, you may be onto something w/ the neuralgia, as Gabapentin is quite successful in treating nerve conditions. You might benefit from occipital nerve blocks, not sure if you'd consider something like that or if it's even an option with EDS-- also, topical Lidocaine might be an idea.   Sorry your still struggling with so much pain  

Hi there,

Sorry you had a frustrating experience. A lot of us here can sympathize with you and know what you are going through, I've been discouraged after appointments also.  Patience can be hard in our situation, as we aren't feeling well and have already been to previous doctors that haven't had the answers. By the time I found my POTS specialist, I had been passed around to many doctors and was so sick, I wanted answers very quickly and placed a lot of expectations on him. It took a good 4 visits before I started to make real progress. A diagnosis is really important, but I think the follow up care is equally important, too. So, in my opinion, 8 months sounds like a long time -- especially when you are feeling symptomatic and still have medication concerns. I think it's important to remember that all doctors are different, there are some that are very supportive and will ask if you have any concerns or questions. Then, there are those who can be short and to the point, where you have to be the one who does most of the communicating. In any case, if you feel disrespected and rushed, a second opinion/finding another doctor might be something to consider. Also, DINET does not endorse the physicians on the physician list. Perhaps you can do a search above to see if there are past threads about doctors in your area/state, or start a new topic to see if anyone can recommend someone.

In my personal experience, anything that is new and concerning warrants a visit to the ER/Urgent care. If you pass out and are on Florinef, it can affect certain electrolytes, so you may want to have those checked out even if your vitals return to normal.

Wishing you the best! Sarah

Hi and welcome to the forum,

I really hope things start to improve for you soon and am sorry that you are going through a difficult time right now.   You mentioned feeling adrenaline rushes, this is a typical complaint amongst POTS patients. This can be caused by a # of things -If you have low blood volume or are dehydrated. Also, if your experiencing low blood pressure's or fluctuations in pressure's, as well as having a hyperadrenergic component of POTS. Changes in Blood sugar levels can also cause adrenaline surges.  Measuring the catecholamine levels(noradrenaline, epinephrine, dopamine) in your blood, through a blood test done in a lab (sitting quietly for 30 minutes, then standing 10 min apart) and also some doctors will do this additionally during a tilt table to  correlate w/ your symptoms. Mine were quite elevated and the addition of clonidine and beta blocker, which counter act adrenaline has helped immensely.

I think your on the right track with pushing for a consult w/ the POTS specialist, if for whatever reason you need to access another Dysautonomia specialist in your area in the future, here is our physician list: http://www.dinet.org/index.php/physician-list  Sending positive thoughts and wishing you the best - Sarah

Thanks for sharing Janet! I hope you'll find the meeting to be an informative and supportive resource.

http://www.dinet.org/index.php/information-resources/support-groups

This is listed on our DINET support group page, which means our board has approved the posting of information on the forum and site.  I wish I was in Beautiful So-Cal so I could attend! Thanks Again.  all my best -- Sarah

Welcome to the forum everyone!

Hi, Womble, - Welcome to DINET!

How terribly frightening for you.   Ivabradine has been such a great addition for me, it's cut my hr in half basically and allowed me to start exercising again which helped a lot of my symptoms also. One thing I'd suggest pressing your doctors for is a cardiac consult to rule in/out Long QT -  I believe Ivabradine can potentiate a pre-existing condition, especially when combined with certain medications.

I'm sorry that you've had a difficult time with finding help. I was diagnosed with Generalized Epilepsy a few years ago, and found it most helpful when I saw an epileptologist. Also, he suggested my fiancé record these events on his phone when possible. I've been seizure free since beginning Topamax ER.

  I know someone mentioned this also - but the arrhythmias may be something really worth looking into. I wonder if your GP would be willing to have you wear a holter monitor for a week or 2?  http://www.jle.com/en/revues/epd/e-docs/autonomic_symptoms_during_epileptic_seizures_110095/article.phtml?tab=texte     https://www.verywell.com/syncope-and-its-causes-1746387

Wishing you the best!

Thanks for the update and sharing your suggestions. So happy to hear that Tyler is continuing to move forward!

Hi, Ancy! How are you feeling since the last update? I hope you are doing well!

For all of us on Ivabradine: I had surgery last summer and had some bradycardia issues ( Into the teens). The anesthesiologist was fantastic and was well prepared, but they felt the Ivabradine could have been the cause combined w/ Dysautonomia/POTS. There is an article I found interesting,  I'm having trouble pasting it atm,  you can google-scholar "ATTENUATION OF HAEMODYNAMIC RESPONSE TO LARYNGOSCOPYAND ENDOTRACHEAL INTUBATION USING INTRA-ORAL IVABRADINE: A CLINICAL STUDY"    Of course, then just the general tips for compression and fluids before and after!  Will keep you in my thoughts!

Welcome, everyone! Happy that you've joined us.

Hi there, Katie,

listed under pharmacologic interventions, side effects of mestinon/pyridostigmine are urinary urgency and frequency. Not sure if this was what you were experiencing, but hopefully it's resolved. I hope that you are continuing to have positive results from this!

ASH Position Paper: Evaluation and Treatment of Orthostatic Hypotension, Dr. Biaggioni http://onlinelibrary.wiley.com/doi/10.1111/jch.12062/full 

Hi, Pumpkin! We missed you!

I was so sorry to read about your struggles with your BFM.  This is such a difficult condition to manage without extended family/friends adding extra stress to our lives. You definitely need support and encouragement when your struggling and feeling so poorly. We're certainly here for you!

Even when we try to focus on other things, our bodies remind us that we're sick. So, I can see how having a person who is so disrespectful and uncompassionate to deal with could take it's toll. I’m just sorry you have to feel attacked and be confronted in such ways, and I’m sure most of us here can empathize with you to some extent. I've had the "but she doesn't look sick" card pulled by family and it's horrible and hurtful. However, there's only so many times you can explain this condition, and at this point it sounds like she is baiting and poking. Whatever is going on here, these are her issues and it's not your fault. I think all the others have made really great suggestions. I feel boundaries could prove useful here, and Lily mentioned something important. We only have control over our behavior, not anyone else's, so we can change how we react to them. 

All my best, Sarah

hello darling,

I'm so happy for you also! I've had similar results with this medicine too. Its really given me my life back in so many ways. I celebrated my ten year anniversary with a trip to NYC a few weeks ago and managed to make it up 7 flights of stairs to a rooftop restaurant. I walked around 2 1/2 days straight!

last summer I began riding my bike after I started this drug, I've been on it for exactly a year. I wish you the best. The only negative is that it has a lot of interactions with other medications for the potential of an arrhythmia called long qt syndrome, so i suggest researching all new meds.

you mentioned in another topic you have ist also right? My symptoms of ist are virtually gone on the ivabradine. I'm so grateful. Anyway, I'm truly happy for you that you e found relief. Like we talk about on this forum, its really about trial and error with meds until finding the one(s) that give the most benefit. Do you experience any brightness? There's a side effect called luminous phenomenon because it affects the if(funny channel) connected to the retina. The natural light is a bit bothersome when I'm outside, so I i just make sure I've got sunglasses.

please keep us updated! Wishing you all the very best ;-)

Sarah

Yes, Lewis that is great news. Really happy for you!