Psalm 23

Actually I need to clarify that I do have b/p swings but that was there before taking Mestinon and has just continued. In other words being on Mestinon has not had an effect on my b/p one way or the other.

Hi Freaked,

I have been on Mestinon for over two years and have found it to be very helpful. I have not experienced tachycardia or b/p swings while on it. I wish you success with it. There are many past postings that you would find interesting that describe others experience with Mestinon.

Janet

Hi Gemma,

Actually it was ordered for fibromyalgia pain which it helped rather a lot. I regularly have sharp stabbing left sided chest pain. It is not a musculoskeletal type of pain but is maybe related to having POTS. That pain was not affected one way or the other by taking Amitriptylin. Dr. Raj touches on chest pain in some of his POTS articles. If you feel as if you are having any sort of cardiac side effects from taking Amitriptylin you need to contact your Cardiologist. Because we do experience so many disconcerting symptoms with just having POTS it does make it difficult to discern what is a medication related side effect and what is another POTS related symptom. If in doubt call your doctor.

Janet

I took amitriptylin 10mg for 18 months and found it helped sleep and pain immensely but I had to discontinue it after seeing a Mayo Neuro who said it would increase my POTS symptoms. It interfers with sudomotor function ( sweat glands ). While I was on it I did not notice any difference in the amount of chest pain I regularly experience.

Hi Jackie,

Yes. Very disappointing indeed. I will most likely be giving Modafinal a try in the near future. That's interesting about your Adderall and a disappointment to you I'm sure when you had realized greater benefit at the beginning then you are now. It's difficult to determine sometimes if a condition worsening or a medication tolerance is the problem. I'm always in search of a new plan of action to combat symptoms whether it be pharmaceutical or non-pharmaceutical.

I hope you are still Mestinon side effect free today and realizing some benefit from taking it. I still have found it to be a very helpful medication.

Janet

I take 60mg of Mestinon three times a days. I take it at 5 hour intervals because I don't want to take the third dose too early. I take it at 6am, 11am and 4pm. It mostly helps restrain my tachycardia and controls my thermoregulation issues to a degree. In the beginning it did help improve fatigue but not anymore. It doesn't seem to have much of an effect on my blood pressure which is very labile with or without medication. It's interesting the way each of us benefits so differently from taking Mestinon. I am beginning to wonder if the effectiveness wears off over time though and a dosage increase becomes necessary.

I take Alpha Lipoic Acid 600mg daily with breakfast. I have not noticed any side effects from taking it. I started taking it for neuropathic pain which it does seem to help. Not enough to completely discontinue my Gabapentin but I have at least been able to reduce the amount.

Janet

No. It hasn't been for me. I have had insomnia issues on and off in the two and a half years of being on Mestinon but I don't believe there is an association. My disordered sleep is related to something else.

Janet

badhbt, it's so funny you should mention that. I thought exactly the same thing. Of all people it was my gyn who recommended I have a sleep study done after having surgery last month. Initially I wasn't going to follow through with it but in the end I thought why not. I'm interested in anything that may help with symptom improvement. I was really surprised when the Pulmonologist gave me the diagnosis though. When I told him how surprised I was at the diagnosis he asked me why. Of course I told him I didn't fit the profile at all and he said that didn't mean anything. There does seem to be a connection between dysautonomia and sleep apnea. I have an apt. with my Mayo Neuro on April 1st so that will be another question for me to pose. I did find a med link article regarding autonomic neuropathy and sleep apnea as being a potentially lethal combination which is very disconcerting and really reinforces to me the importance of getting diagnosed and treated. I'm on day three of CPAP. Appearances can be surprisingly deceiving.

Janet

I seem to have developed an increased problem over time with a variety of breathing irregularity issues. In addition to feeling frequently short of breath I also experience a periodic gasping breath which can occur throughout the day. I should think the breathing irregularities we develop are related to having dysautonomia. As bellgirl has suggested having a sleep study done can be very beneficial especially for those experiencing gasping breaths at night during sleep time. I was just diagnosed with severe sleep apnea a few weeks ago.

I was started on Clonidine 0.1mg twice daily about 2 years ago. I don't recall that it took very long to adjust to it. I was absolutely amazed at how much reduced my tremulousness was as a result of taking this medication. It really does help immensely with those catacholamine surges. I can't imagine getting by without it.

Mark,

That's very interesting about your aroma therapy success and herbal sleep remedy cautions. For myself I am so sensitive to fragrances I'm not sure if I could tolerate it but I will have to give it a try. The change in sleep cycles and dreaming more that you describe have been concerns of mine as one could certainly expect a potential marked sympathetic response to unaccustomed dreaming. That's great that a beta blocker increase has helped that problem for you. I still don't have my PAP machine so I don't know what kind of problems I'm going to encounter yet.

fkrizanek,

Welcome to the forum. That's great that you have found a sleep system that works for you. I love music. I have never thought about wearing earphones and listening to music as I go off to sleep. I may have to replace my earplugs with something like that. Have you realized any symptom improvement since starting PAP therapy ?

Thanks to all. I really appreciate hearing about what is working for others.

Janet

Hi Kim,

It makes me smile to know that I made you smile. Thank you for sharing that. I really don't think its possible to not have any down days. I try to stay as upbeat as possible but with every set back or new diagnosis I find an associated mental adjustment period, regrouping and down days which eventually resolves.

I hope you are doing better with your j tube.

Janet

Hi Rachel.

How wonderful. That sounds like a move in the right direction for Tyler. It's amazing what supplemental b12 can do. Keep us posted on how Tyler does with the rest of the recommended supplement regime. I am also a huge fan of supplements. Thanks for the update.

Janet

Hi Kim,

I'm so glad CPAP has helped, at least to some degree. I can't imagine how difficult it must be to deal with a feeding tube and CPAP going at night. Obtaining any kind of consistent restorative sleep seems so illusive. You certainly have immense challenges to overcome in general. Your fighting spirit and attitude are an inspiration to me. Thank you so much for your response. I'm actually still waiting for a call from a medical supply rep so I can receive my machine and use instructions. I'll let you know how it goes.

Janet

Kim,

I was just diagnosed with sleep apnea a couple of weeks ago and am awaiting delivery of a PAP machine. Four weeks of an APAP first then continuing with that machine or changing to a CPAP. Have you been able to adjust to your CPAP machine and have you found there to be any symptom improvement ? I haven't seen many posting of others with sleep apnea here but did notice a mention that 30% of dysautonomia patients have this disorder. I hope you are realizing some symptom improvement with your CPAP therapy. I'm sure I will give my husband and kids a good laugh as well when they see the contraption on my face. Lol.

Mark,

I hope you are continuing to do well with your sleep apnea therapy. Your success with it is encouraging to me. At this point I don't quite know what to expect. I'm guardedly optimistic I guess.

Janet

Hi Sarah,

I'm so happy to hear of your perseverance and improvements. How wonderful that you are able to manage a full time job in spite of such significant challenges. Here's to a New Year of continued improvement. Take care not to push yourself too hard though.

Janet

Thank you so much. The new website looks fantastic.

Janet

CinderCyn you're right in that the on and off routine with both the abdominal binder and compression hose can be a bit tricky. My morning routine does not begin with a shower as in days past but starts with getting compression gear on asap, then drinking fluids, eating a banana, taking medication, drinking a coffee, waiting for everything to work, then a walk, breakfast and finally a shower. Lol. After I shower the compression gear goes back on. I have multiples of everything so I have freshly washed and dried gear to put on after I shower.

Were it not for the abdominal binder I would probably be reduced to consuming liquids and even smaller amounts of food than I already do although I find that whether it's a liquid or solid the postprandial pooling impact is immense. I truly hope you realize as much symptom improvement as I have with this device. In regards to sizing, I believe the Gabriella Breathable Elastic Binder website has a sizing chart. For myself I typically wear an extra small ( I weigh 102 lbs.) but had to order a small as that was the smallest size offered. In spite of it being somewhat bigger than I would have liked it still works really well. The binder does stretch out over time and I have to replace them periodically. I may have a tendency to over tighten it at times though and I'm embarrassed to admit to sleeping in it when I am having a particularly bad day and I just cant bare to take it off. I am certainly not recommending this practice though.

I'm so sorry you are having to deal with this condition. It can be quite overwhelming to say the least especially in the beginning. Continuing to read past posts and links can be very helpful. Being proactive is essential as is realizing that symptom management is truly trial and error. Hang in there.

Janet

I thought this Mayo sleep apnea link was interesting particularly as it described abrupt awakenings as a sleep apnea symptom.

http://www.mayoclinic.com/health/sleep-apnea/DS00148/DSECTION=symptoms

Of course medications such as beta blockers can cause many side effects such as sleeping issues.

Janet

It might be worth seeing a sleep specialist and undergoing an evaluation. I had surgery a few weeks ago which resulted in a post op referral for a sleep apnea study. I have struggled with significant sleep issues for a number of years now. While at Mayo two years ago I had a basic overnight pulse ox study done which was normal. Seeing an actual sleep specialist (pulmonologist) and having a more detailed evaluation provides much more specific information then just an overnight pulse ox though. My appointment is tomorrow. While I am certainly not wishing for another diagnosis I would like something helpful to come of this. Many with dysautonomia seem to have an associated sleep disorder for any number of reasons. It can be so frustrating, frightening and exhausting I know.

Janet

Hi Kitt,

I just wanted to send you my best wishes for a productive appointment. I go to Mayo, AZ so I can't comment on Mayo,MN but I did listen to Dr. Sandroni's 2013 International Dysautonomia Convention speech and was very impressed. I'm sure seeing her will be a positive experience. Keep us posted on how it goes.

Janet

Sadly yes the abdominal binder does bunch a bit around the waist. I guess I have gotten used to it though so the bunching doesn't really bother me. I think the amount of bunching depends upon whether you are short or long waisted.

I order my compression hose from Discount surgical.com. I wear thigh high and the compression strength that was recommended to me by Mayo Neuro was 20-30mmHg.

What I notice when I wear the hose and abdominal binder is that I am able to remain upright for longer periods of time before getting symptomatic.

Janet

When you try on the abdominal binder you will just have to experiment with the adjustment of it. I like mine pretty snug but not enough to restrict breathing or cause pain. It does have to be snug enough to give adequate compression though.

Between the beige abdominal binder and beige compression hose my husband teases me and says I look like a mannequin. LOL. It's amazing how well this stuff is concealed under clothing though. Hope all goes well.

Janet