Psalm 23

I'm a Mayo Hyperpots patient and am on Mestinon and Clonidine as was recommended. I have been helped tremendously by both medications. I am a mixture of hyper, hypovolemic and neuropathic maybe that's why Mestinon was recommended to try. I'm glad that Vandy now recognizes that many pots patients have more then one subtype and recommend treatment based on test results and not on one particular subtype. They appear to be trying to get away from labeling their pots patients. They make mention of that in what I think is a newish webpage. I have zero tolerance for antidepressants so I have never been on any of them for any great length of time ( except for elavil which I was told was contraindicated so I dcd it ). Janet

Thanks for sharing this interesting and validating report Chaos. Oh yes. I most certainly recognize myself in this report. I hope it won't be too long before some advancements in effective treatments are made. Janet

While at Mayo in 2011 I underwent extensive lab work looking for the cause of my autonomic neuropathy. Even though I came up seronegative, an autoimmune cause was still thought to be a possible reason. I have heard that Mayo lab has expanded upon their testing capabilities so when I return next year I'm assuming the testing will be redone especially since I have developed symptoms of sfn. Janet

No I would definitely taper down the Clonidine if I were inclined in that direction. It has been so helpful though in reducing jitteriness/tremor I can't imagine life without it. I'm hoping for a shot at trying Florinef in the not too distant future now that my pressure is tending toward lower numbers. Janet

Here here Alex. Your take on the subject of unhealthy oils and of deceptive advertising with regard to products that are promoted as healthy and are anything but is absolutely right in my opinion. One does have to be careful of the types of fats consumed and as with everything else in this condition the helpfulness of a particular type of diet is truly trial and error. For those of us potsies with postprandial pooling and gastric motility issues a highier fat diet results in horrible consequences. Janet

I experience episodes of post herpatic neuralgia periodically and have found Lidoderm 5% patches applied to the affected areas helps the pain. The patches can only be applied to intact unbroken skin however. So for painful under the skin shingles areas lidoderm patches may prove helpful. Janet

A few years back my Rhematologist prescribed LDN to help with my Fibromyalgia symptoms. I took 3.0mg for 3 months then 4.5mg for 3 months but found to my disappointment that it did not relieve any of my fibro symptoms. I didn't realize at the time that it was also a possible treatment for pots. In thinking back it did not help my pots symptoms either. Janet

Hi Rich, Thank you so much for the Ivabradine information. At present between the Mestinon and Clonidine my heart rate is about as low as it should go so I shouldn't need to resort to another beta blocker. If that changes I will keep the Ivabradine in mind. Thanks again. Janet

Alex, Thank you once again for all of the interesting thought provoking links you post. Maybe at some later point I will give melatonin another try. Perhaps when I have to go off of all meds for retesting at Mayo. Hi dave, Yes. It is all such a delicate balance. For myself I am struggling with what would appear to be an increase in pooling and cerebral hypoperfusion. I think my heart rate got too low so I dcd my propranalol a few weeks back and feel somewhat better for it. I agree. Being tachy is not as distressing as having reduced cerebral perfusion. I am awaiting reevaluation myself. Trying to achieve some sort of livable balance is very difficult with so many variables involved and then of course the ever changing nature of this condition doesn't help. Janet

Kara, I would say you now have many friends in addition to Dexter Janet

AllAboutPeace, I actually wear 20-30 mmHg compression leggings unless the weather has turned unbearably hot. I have reddish purplish mottled discoloration to my feet and legs when I am upright so one would think that leggings would make the pooling in the feet worse but they don't in my case. They do however help the pooling from the ankles on up and improve stability in my legs. My feet get discolored but not swollen so I guess that's why they seem to be okay. For me they seem to make such a significant difference in terms of symptom reduction that I put up with a bit of a battle in getting them on. I have a system worked out. Lol. I think compression hose though would be more difficult to get on. Everything is such a case of trial and error. I do have to say though that the abdominal binder would be harder to get along without then the compression leggings. Your puppy is adorable too. Janet

Kara, The brand of abdominal binder I wear is a Gabriella Breathable Elastic one. I order them from Amazon.com. My only two complaints about them is that they do stretch out over time and need to be replaced and they do not come in an extra small. That said, I can not imagine life without one.They do come in all the other standard sizes. I think the website posted a size chart. Another potsie on this forum expressed how much wearing an abdominal binder helped her and mentioned the Gabriella binder as being one that she used. I will be forever grateful to her for sharing that information as it has helped me immensely. Well earplugs does definitely sound like something you can cross off the try it list. Dexter looks like an adorable companion. I'm sure in spite of the care involved Dexter rewards you with great joy. AllAboutPeace, I think it's always so exciting to find a non pharmaceutical thing that helps alleviate symptoms. Like the abdominal binder. Do you wear compression stockings ? I find that keeping my legs elevated as much as possible makes a big difference as well. KJay, Thanks for bringing up the V8 juice. I will have to give that a try myself. Janet

I have an ongoing worsening problem with shortness of breath. I was tried on labetalol as an add on to my other medications to try and better address my labile blood pressure. It caused a significant increase in my shortness of breath problem as well as an increase in chest pain so I was tried on propranalol instead which resulted in the same response. The dosage was very small. No more beta blockers for me. Janet

I guess I couldn't say whether or not taking melatonin had a positive effect on controlling my tachycardia or not since I had already been started on mestinon which has really restrained my tachycardia and clonidine which feels as if it has significantly reduced my NE levels. Unfortunately I and it would appear many others continue to be very symptomatic in spite of a restrained heart rate and more controlled NE levels. In the end I'm not sure how helpful it is to suppress what seems like a compensatory mechanism. Janet

AllAboutPeace, I think the sooner the abdominal binder goes on in the morning the better. I have never tried to put it on while still laying down as I need to look in the mirror to line the velcro up properly. I have found it to be so helpful though that on bad days I just sleep in it so I already have it on when I stand up in the morning. I think I also sleep better when I leave it intact as it reduces what feels like supine abdominal pooling. I have a high supine NE level as well as a high standing level. Kara, Another thing I do that helps improve my sleep is wear soft earplugs and I also sleep with a fan on just for the constant white noise it emits. I have it facing away from me because it gets too cold otherwise.

Hi CarrieJessica, Gastroparesis is a problem I am challenged with. I have had two gastric empty scans done. A 90 minute one done locally then a 6 hour one done while at Mayo. The testing is pretty easy to get through. You are given a meal to consume that has radioactive material in it and then imaging is done periodically to assess your GI motility. As with everything else we deal with the severity of this problem varies a lot from one day to the next. I am on a low fat, low/med fiber diet. I have found anything I ingest that increases the work load on my stomach not only has a negative effect on motility but increases postprandial pooling so I have to be really careful about what I eat. It's helpful to check out a gastroparesis website for some info on dietary guidelines to follow. I hope your testing goes well and you get the answers you need. Janet

Hi Alex, Back in 2011 I was told by Mayo Neuro to discontinue the Elavil I had been taking for sleep and pain. I was told Elavil could make my pots symptoms worse and I should try melatonin for sleep so I first tried 6mg which did nothing then 10 mg which did nothing. I tried different brands and a timed release version. I was desperate for sleep and I did not want to take a prescription sleep aid. In the end I gave up on melatonin. I have a very labile b/p so I'm not sure whether it had an effect on my b/p or not. I'm glad some people benefit from taking it. Janet

Hi Kara, I have found that moving along slowly and in stages is what works best for me. I put on compression garments, eat a small meal, take medications, salt/fluid and I do indulge in one cup of coffee that my husband makes for me. I sit up with legs elevated and wait for everything to take effect before I move onto the next thing. It was also recommended to elevate the head of the bed 4-6 inches which can be achieved by placing blocks or bricks under the upper feet of the bed. Trying to prop yourself up with pillows for sleeping isn't quite the same thing. I do notice that I feel somewhat less symptomatic upon waking if I can get in longer periods of unbroken sleep at night which is sometimes achievable and sometimes not. I hope you find something that is helpful for you. Janet

I'm really excited about attending this meeting. It sounds like it should be very interesting. I would love love love to meet some other California potsies. If you don't live too far from L.A. please consider attending ! Janet

A huge thank you Rachel for all the energies you put into this forum. You're the best. I so appreciate all that you do. I hope you didn't wear yourself out.Thank you also to Charlie for all of your efforts. Janet

Welcome !

Hi Blessedgal and welcome. I second all the positive comments made by Chaos and Aimes. Going to Mayo, AZ was money well spent for me. I was seen by Dr Goodman as well as many other doctors as was deemed necessary for a thorough evaluation. I came away with accurate diagnosis, an effective management plan and amazing phone support. Best of wishes in making your big decision. Janet

Sarah, I'm so sorry the 15mg caused you such GI distress. I'm sure that was very discouraging for you. For some it sounds like it takes a bit longer to get past the side effects. As Alex shared consuming a significant amount of food with it for better tolerance is really important. I hope it gets easier for you. Janet

One other thing I did want to make mention of is that I never take mestinon on an empty stomach.

Suthrngal, I also find that my pain issues are much worse when I feel cold. I have a narrow range of temperature comfort 80-84 degrees though so what I perceive as cold or overheated is a fine line. I always bring a jacket or sweater with me where ever I go especially a doctors office. I find once I get chilled it takes a long time to reheat and realize a reduction in my pain level. My pots symptoms however are much more problematic when I am overheated versus cold though. Dressing in layers is very helpful. I'm sorry you are not getting any answers and are in such distress. Racer, Wow. You sound a lot like me regarding your temperature tolerance level.