Anyone With Hyperpots?

[kitt]

Kitt,

Lebetalol made me so much worse. I was on the max dosage for such a long time until my current doctor took me off of it on my first consult with him. It made my flushing and thermoregulation issues so intense (which I couldn't put together for some reason, just thought I was progressing before I had a diagnosis..) I got so much worse from it and couldn't understand the time why so much medication wasn't helping. Go figure....

I wish I could help regarding the hyper pots diagnosis and low numbers but I'm completely on the opposite end of the spectrum with incredibly high numbers. I take Propanalol (Inderal) which has helped along with the Ativan, Midodrine, & Clonodine.

Sarah, Labetetlol also made me feel worse.

Badhbt, Propanalol also was awful for me, dropped my BP to 80 over 40, as did the first BB i took, Attenenlol, (too tired to spell check).

Methyldopa did help, but it lowered by BP too much also, (it's a med for high BP) but dramatically lowers sympathetic excess. As I mentioned though, the side effects are very difficult.

Am just weaning up on Clonodine and weaning down dramatically from Methyldopa so feel horrible. Clonodine is great at keeping my tachy down. My normal pulse is 120 sitting....Crazy, I know.

Btw, before I was dx with pots, I said to my internist once, 'Your nurse just told me my heart rate was 110.' He said, 'That's nothing, it's usually 120'...I said isn't that just way too high? He told me, 'Well, you're very petite and a lot of petite ladies have fast heart rates.' Wow... He's still my primary though, because I basically just need him to act as a home base, which he's good at. But what a crazy thing to say.

[Guest Alex]

Kitt, see here

http://www.ncbi.nlm.nih.gov/pubmed/1724005

Long-acting alpha 1-adrenoceptive sympathomimetic agent suppresses sympathetic outflow to muscles in humans.

"To clarify the effect of a long-acting selective alpha 1-adrenoceptive sympathomimetic agent on sympathetic outflow to muscles (muscle sympathetic activity, MSA) in humans, 5 mg of midodrine hydrochloride was injected intravenously in ten healthy male subjects aged 19-25. Spontaneous MSA was significantly suppressed as well as plasma norepinephrine level without changing heart rate, or systemic blood pressure. The suppression continued for more than 90 min, and this is supposed to be due to negative feedback action on the baroreflex loop. The absence of significant changes in heart rate or systemic blood pressure in healthy subjects suggests that hemodynamic homeostasis is maintained by reducing the MSA in response to a long-acting sympathomimetic agent, like midodrine hydrochloride, which constricts peripheral vessels directly."

If I'm not mistaken I mentioned "Muscle Sympathetic Activity" to you in the past. Measuring this is - IMO - the best method to assess the sympathetic overdrive state, but that is not (yet) a very commonly performed type of test, at least not that I know of. See more about it in this article

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3273724/?report=classic Advances in Sympathetic Nerve Recording in Humans

I hope this helps.

Alex

[Guest Alex]

Forgot to mention, but I'm sure you figured it out - the authors of the article on Midodrine for CFS are from Israel. They published over 200 articles mostly on CFS - I can post links to more of their work if anyone is interested.

Alex

[arizona girl]

Hi all,

It is interesting how we all respond so differently to the different meds, even when we all seem to have hyper pots. I was on atenenol and it was to long acting so I was having supine hypotension when sleeping causing poor sleep and I'd wake up rigid and in pain. Propananol made me gain weight. So, if your skinny that might be a good thing. In my case as I have hashimoto that was not good for me. I also have pcos without elevated androgen/testosterone. There is more then one form of pcos, I never had the increase in hair that is common. The best med I've used for PCOS is a form of glucophage, I take glumetza which is easier on the gi track. I lost 25 pounds just from going on it. My insulin level that was crazy high in the 60's and 160 on GTT/ITT test are now down to 14 for the first time. Whew Hooo! I'm down 4 pounds too. I can't help but feel the high insulin may have been a result of the increase of norepi on standing, I went up to almost 1200 on standing.

Then clonidine was a nightmare for me, I responded like an addict with my body wanting more and more to keep me down. Coming off it was intense. After that Dr. Grubb gave me the a low dose short acting form of labetalol that I can tirate up or down as needed. It has worked well. With treating my causes though my hr/bp responses are much better, I don't swing as wide as I used to. I still have my days though where I get spikes. So it's not perfect.

Alex thanks for all those great links!

[kitt]

I've studied articles by Vandy, Mayo and Grubb, and neither Midodrine nor Mestonin are rec by any for hyper pots.

(Studies on NE and muscles don't affect NE plasma levels apparently.)

Here's an article by Grubb with rec drugs for both pots and hyper pots. (H for hyper)

Has anyone benefitted from the antidepressants he listed?

Open the window he has in this article to see what drugs he recs for both types of pots.

http://circ.ahajournals.org/content/117/21/2814.full

In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects.^9,10 One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined α and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed α receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients.

[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

[kitt]

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 Janet for sharing that.

I had a bad reaction to Mestonin, but am glad it's helping you. (I asked to try it based on encouraging comments from people with pots, although not hyper pots). Had a very negative response.

My hyper situation is extreme and even if I didn't have pots, being in an extreme hyperadrenergic state is over riding my hypotension and resting heart rate of 120.

So am currently focused on trying to get the sympathetic nervous system to 'shut up' and then I can focus on the other pots issues.

Frustrating because the two frontrunners (Clonodine and Methyldopa) are both designed for high BP, so they make my already low BP worse.

Thanks for sharing that you can't tolerate antidepressants. I'm willing to try based on the theory that they address NE.

May I ask you how much Clonodine you're taking Janet? Am glad it's helping you. Do you use the patch, pills or a combination of the two?

Am in the process of weaning off Methyldopa onto Clonodine.

Glad you're getting some relief with your current protocol. Are you able to sleep through the night, and able to regulate your body temp?

Best,

K

[Guest Alex]

Here is an article on Mestinon co-authored by Dr Grubb.

http://www.stars-us.org/files/file/Mestinon%20UT%20final.pdf

If you look at table 1 on page 4, 18% of the patients in the study were H-pots. The one thing about this study, Mestinon (pyridostigmine) is not used as a first-line therapy but added to existing medications.

Also Vandy mentions Mestinon as helpful in increasing the activity of the parasympathetic nervous system (thus reducing the sympathetic response)

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38923

http://circ.ahajournals.org/content/111/21/2734.long

Still, from my experience with this med I can see why some people can have a hard time tolerating it - the GI side-effects can be quite a pain. I am not hyper-POTS though.

Janet, I peeked at your profile (I hope you won't mind) and I noticed your standing NE levels are/were in the 2900 range - WOW!!! That is pretty extreme.

Alex

[SarahA33]

There's some confusion for me whether Dr. Grubb recommends higher sodium intake for his hyper patients? Of out curiosity can you guys help?

[kayjay]

There's some confusion for me whether Dr. Grubb recommends higher sodium intake for his hyper patients? Of out curiosity can you guys help?

Sarah- I'm not a patient of Dr. Grubbs but I've gotten myself into some trouble with his suggestions for h-pots. I'm not sure how much Mayo agrees with him on a case-by case basis. He certainly has helped many people on this forum.

Mayo certainly sees more pots and hyper pots people so just biased on sheer numbers, they have a lager pool of research and statistics. Also I saw a team at mayo - neruology mainly but also - cardiac team.

I'm not suggesting that Dr. Grubb is wrong and again I've never even seen him. I've gotten myself in trouble by letting my salt get too low, and by taking Wellbutrin. Cymbalta didn't harm or help but I at least had the sense to run that by mayo doctors before I started.

His published material that I have read seem to consist mostly of case studies. I personally have to be careful will applying what helped someone else to me.

At this point I check any medication changes I may want to make with Dr. Fealey.(mayo)

I do agree the salt thing is a bit weird. Most of us hypers do not experience high blood pressure from increasing salt. I simply do not develop endema. I've found that top doctors (cardios, nephrologists, and neurologist) would only suggest limiting salt in patients that are retaining too much fluid. I had a long conversation recently with a nephrologist on this very topic. High salt diet does not = high blood pressure.

[SarahA33]

Hi kJay,

I had also read some case presentations but had a hard time basing some suggestions off of them. It's difficult because we are all so completely different. As you know, I'm pretty extreme with my pressures and heart rates, and increasing my sodium has been one of the best moves i've made so far. I do not have swelling or water retention either, and even thought i'm on a low dose of Florinef to taper off, I at one point was on 0.4mg and still did not swell.

Take care!

Sarah

[Psalm 23]

kitt,

I'm sorry you had such a negative response to Mestinon. I guess I must be fortunate in that it sounds as if most hyperpotsies don't tolerate it or find it to be helpful. As with all of the other potentially helpful medications I think most of them are worth a try unless contraindicated for a particular individual. I think it's definitely worth trying one of the recommended antidepressants so you can find out if it helps or not. I couldn't tolerate the increased jitteriness, insomnia or GI side effects.

My hyper situation is pretty extreme as well. I am only taking 0.1mg Clonidine Bid. That was meant to be a starting dose but when I tried to increase it my already problematic fatigue became intolerable so what was intended to be an initial dose (2 years ago now ) was never increased. In spite of maintaining a lowish dosage taking Clonidine has helped tremendously with severe jitterness/tremor. Lately though my very labile b/p has been staying too low for me ( 90's/50's and sometimes 80's/40's ) so I'm not sure what is going on except that I appear to be having more pooling issues and some of the restrained jitteriness is returning. I'm wondering if at this point I may be a candidate for midodrine and/or florinef. I don't want to give up the clonidine. These issues cannot be addressed until after the first of the year however.

I am actually able to mostly sleep through the night but only because of taking Neurontin 600mg Tid which was ordered for pain. Prior to taking Neurontin I was up every two hours but I don't think it was pain waking me up. I also sleep with a white noise fan on and ear plugs in which helps. Are you able to sleep through the night kitt ?

Thermoregulation is still a huge problem for me. I believe Mestinon helps to a degree but not as much as I would like it to. Lately I'm not sure if the Mestinon is working less or the thermoregulation is getting worse. How are you with body temp regulation ?

Thanks kitt. I hope you find a regime that helps you.

Alex

Thanks so much for the info and links. I hope you are feeling better these days. Oh no I don't mind at all. My profile info is not private. Yes I guess my NE level is kind of high. Right now I'm sure it's lower with the meds on board but it doesn't take much to return to that before med high NE level feeling.

Janet

[kitt]

Janet, Thank you for sharing. We share several issues in common. I'm also hypotensive, and have BP that is labile but often goes to 80's over 40's and 70's over 50's. Very difficult. Most of my fainting has occurred when I first get out of bed in the morning. Before I was dx I blamed myself, thinking, 'You must have gotten out of bed too fast...' But I've since read that those with very low BP have had that experience of fainting when that first get out of bed due to sudden postural change and low BP.

Do you feel the Clonodine is exasperating your low BP? 3 mg of Methyldopa daily definitely caused my BP to go to low, and I began to suffer severe coat hanger pain, (associated with extreme hypotension)...Have you encountered that Janet? Since weaning down from Methyldopa the coat hanger pain has dissipated.

I'm in a bad place with sleep. I'm unable to sleep for more than 2 hours at a time, and often awake in a severe sweat with my hair plastered to my neck, and my nightgown soaked. So odd, because prior to hyper pots I didn't sweat. It was odd. I didn't even wear deodorant. I could horseback ride with friends for hours on trails and be dry as a bone. I always thought it was a little odd, but THIS extreme sweating is horrible. I also get chills sometimes, so to answer your question, Thermoregulation is a huge problem for me too.

You mentioned Neurontin for sleep, and that's very encouraging to me! I have a prescription for it that I filled, and didn't really give it a fair shot, and abandoned it. It was prescribed for neuropathic pain, and I didn't find it to be very helpful for that. I still have the script and I'm definitely going to restart taking it based on your experience with sleep! Thank you for sharing that.

Speaking of scripts prescribed that I 'abandon', I literally have a small shopping bag filled with scripts that I didn't find helpful. Unless the experience was horrible, (all beta blockers, mestonin, labetalol, which I threw away), I put abandoned scripts in the shopping bad. This will not be the first time I've gone back to a medication to give it another try.

I'm thrilled that you shared that Neurontin helped you sleep! I'm going to get it out tonight and and try it.

Btw, After sharing that my internist told me my pulse was so fast (120) was because I was petite, (Before I was dx with pots,) I Googled it after I posted about it recently on Dinet, and I found a reference to women who are petite tend to be the ones that tend to have sympathetic excess. I bookmarked it. It wasn't in a peer reviewed journal, but I found that interesting. I can tell by your picture that you're petite. I wonder how many of us, (especially those of us with extreme hyper pots, NE over 1000 are petite?) Just curious.

What I've learned is how incredibly different those of us with hyper pots present and how differently we respond all respond to the same medications. I had someone on Dinet once tell me it was impossible that I had hyper pots with hypotension, but there are many of us who present that way.

Janet, do you take Clonodine at bedtime? You mentioned it caused fatigue. I agree, so I'm taking it at bedtime. Have you tried that? I'm still on a tiny dose. ( .5) so it hasn't helped yet with the sympathetic excess. I don't have 'jitterness' but I'm glad it's helping you with that.

I'll let you know how the Neurontin works for sleep. Are you able to sleep through the night, and do you experience night sweats?

Sorry for such a long post...

Best,

K

[kayjay]

I'm tall and excessively hyper . I've never been overweight but I became very thin before diagnosis. I just couldn't keep weight on.

As for the sleep issue, I take Ambien CR. I don't know if I'd sleep without it. I still don't sleep well but it beats waking up every few hours soaked in sweat.

Also for what it's worth I have hypo and hypertension.

It's probably more unusual to have hyper pots and not have episodic high pressures just because of the effects of adrenalin on the body.

[Psalm 23]

kitt,

My b/p used to range between 90's/50's - 200/110 ( my b/p was described as very labile by Dr. Goodman at Mayo ) but mostly settled somewhere between them so I would never have been considered hypotensive so I'm not sure if now after 2 years the clonidine would be aggravating an overall decreased average b/p or not. I guess I could try reducing it a bit to see. It's all such a balancing act. I take the clonidine at breakfast time and dinner time. I don't believe my present dose is increasing my chronic fatigue though. It was at an increased dose that I noticed that problem (0.15mg bid ). Ironically until recently I was also on propranalol to better control the high end of my b/p but that has since been discontinued.

As far as fainting goes I have actually only experienced that about three times. I usually go through a sequence of events before I get to that point so I have fair warning and can sit or lay down before it happens. I can't imagine how challenging it must be when it happens quickly without much time to react. When I stand for too long I do start to experience the coat hanger pain distribution. I assume it's from a decrease in blood perfusion. For myself I don't think there is always a correlation between a low b/p and symptoms as during my ttt I was most symptomatic (extreme dizziness and nausea ) when my b/p peaked at 160/104. I am guessing the high NE levels and the hypertensive episodes might be compensatory. One of my fears is the loss of a compensatory mechanism. I like having it pharmaceutically tempered but not completely eliminated.

Funny you should mention sweating as based on recent lab values I am supposed to be in menopause but I do not have the most classic of symptoms. I do not have night sweats in fact I do very little sweating at all and I do not have hot flashes. I have chills a lot and wear lots of layers of clothes and sleep with about 5 blankets and flannel pjs. It's so ridiculous. I over heat easily as well though and then the progression and severity of symptoms advances more quickly.

I hope I don't sound like a neurontin pusher but it really has worked wonders for me. It wasn't until I reached a dosage of 1800mg a day that I found success with it in terms of sleep and significant pain reduction. With dosage increases I did notice some drowsiness initially but it resolved pretty quickly. I have been dealing with fatigue issues for years so I can tell with medications if what I am on is increasing what has been an ongoing fatigue problem and what is a medication induced drowsiness side effect. An interesting thing about the neurontin is the calming effect I feel it has on my brain and general system. I think maybe that is why I am now able to sleep. I just hope I don't develop a resistance to it.

There would appear to be many subtypes within subtypes and such different responses to medications and various recommended treatments. I'm left wondering what the future holds.

I am 5'4" so I guess that is bordering on petite but I wonder if it might be more a weight and less a height association with hyperpots. It really is very hard to keep weight on with all those excess cats on board. I joke about being in a cat fight much of the time. Lol.

Let me know how you do with the Neurontin. Yes. I do sleep all night ( 7-8 hours ) and no night sweats. I'm sorry you have to deal with those as well as insomnia. Must be terrible. I hope you have as much success with neurontin as I have.

kJay,

I can totally relate to the challenges of trying to keep weight on. Please Let me know if you have found anything that helps you in that regard.

I'm so glad you have realized some benefit from taking Ambien CR. It's always so nice to find something that helps. I'm sorry you have to deal with night sweats. That in and of itself must be very disruptive to a solid nights sleep.

My b/p has always been very labile so probably similiar to yours kJay. Dr. Goodman at Mayo described my b/p as very labile.

I hope everyone is having a restful weekend.

Janet

[kitt]

kitt,

My b/p used to range between 90's/50's - 200/110 ( my b/p was described as very labile by Dr. Goodman at Mayo ) but mostly settled somewhere between them so I would never have been considered hypotensive so I'm not sure if now after 2 years the clonidine would be aggravating an overall decreased average b/p or not. I guess I could try reducing it a bit to see. It's all such a balancing act. I take the clonidine at breakfast time and dinner time. I don't believe my present dose is increasing my chronic fatigue though. It was at an increased dose that I noticed that problem (0.15mg bid ). Ironically until recently I was also on propranalol to better control the high end of my b/p but that has since been discontinued.

As far as fainting goes I have actually only experienced that about three times. I usually go through a sequence of events before I get to that point so I have fair warning and can sit or lay down before it happens. I can't imagine how challenging it must be when it happens quickly without much time to react. When I stand for too long I do start to experience the coat hanger pain distribution. I assume it's from a decrease in blood perfusion. For myself I don't think there is always a correlation between a low b/p and symptoms as during my ttt I was most symptomatic (extreme dizziness and nausea ) when my b/p peaked at 160/104. I am guessing the high NE levels and the hypertensive episodes might be compensatory. One of my fears is the loss of a compensatory mechanism. I like having it pharmaceutically tempered but not completely eliminated.

Funny you should mention sweating as based on recent lab values I am supposed to be in menopause but I do not have the most classic of symptoms. I do not have night sweats in fact I do very little sweating at all and I do not have hot flashes. I have chills a lot and wear lots of layers of clothes and sleep with about 5 blankets and flannel pjs. It's so ridiculous. I over heat easily as well though and then the progression and severity of symptoms advances more quickly.

I hope I don't sound like a neurontin pusher but it really has worked wonders for me. It wasn't until I reached a dosage of 1800mg a day that I found success with it in terms of sleep and significant pain reduction. With dosage increases I did notice some drowsiness initially but it resolved pretty quickly. I have been dealing with fatigue issues for years so I can tell with medications if what I am on is increasing what has been an ongoing fatigue problem and what is a medication induced drowsiness side effect. An interesting thing about the neurontin is the calming effect I feel it has on my brain and general system. I think maybe that is why I am now able to sleep. I just hope I don't develop a resistance to it.

There would appear to be many subtypes within subtypes and such different responses to medications and various recommended treatments. I'm left wondering what the future holds.

I am 5'4" so I guess that is bordering on petite but I wonder if it might be more a weight and less a height association with hyperpots. It really is very hard to keep weight on with all those excess cats on board. I joke about being in a cat fight much of the time. Lol.

Let me know how you do with the Neurontin. Yes. I do sleep all night ( 7-8 hours ) and no night sweats. I'm sorry you have to deal with those as well as insomnia. Must be terrible. I hope you have as much success with neurontin as I have.

kJay,

I can totally relate to the challenges of trying to keep weight on. Please Let me know if you have found anything that helps you in that regard.

I'm so glad you have realized some benefit from taking Ambien CR. It's always so nice to find something that helps. I'm sorry you have to deal with night sweats. That in and of itself must be very disruptive to a solid nights sleep.

My b/p has always been very labile so probably similiar to yours kJay. Dr. Goodman at Mayo described my b/p as very labile.

I hope everyone is having a restful weekend.

Janet

Janet, I took 300 mg of Neurontin last night and slept for 5 hours. That was a blessing. (Similar to the benefit I got from Methyldopa at 3mg)...Am very, very pleased for the heads up on it. As I said, I had the script, but never connected it to sleep.

Am amazed you're taking 1800 mg per day of Neurontin, and very hopeful that you're able to tolerate that dose. Maybe I can tolerate a higher dose as well, and it may help even more with sleep and night sweats. (I did not have a sweat last night, unlike a similar sleep time with Methyldopa which including nightly sweats.)

You're not 'pushing' Neurontin to me, because I have an MD who already pushed me...I just choose not to continue with the med. Am very hopeful now that I've revisited it. Could not come at a better time.

Thank so much for sharing. This is the amazing grace I've experienced with Dinet.

Janet, I too usually get a 'warning' now when I'm feeling about to faint, and can usually sit, (even if it's on the floor) before fainting.) I'm grateful for that. Occasionally though there's no warning, and I just hope for the best. Be especially careful in a hot shower washing your hair with you arms and hands held high.

Interesting that you don't sweat with hyper pots and while in menopause. It really does illustrate how different we all are with hyper pots. I also read that hyper pots patients can have a very good experience with a med, and it can stop working for no discernible reason. It's a puzzle. Even to experienced doctors, hyper pots is a puzzle.

Thanks for the heads up on Neurontin. Tonight will be my second night, and I'm hoping for at least another 5 hours. I'll let you know how it continues to go. Thank you again for sharing!

Best to you,

K

[badhbt]

Kitt- Kjay I also take Ambien for sleep. It really helps. I started out with the Cr Ambien, but I am down to 5mg, but I can understand getting excited for 5 hours of sleep!

[kitt]

Kitt- Kjay I also take Ambien for sleep. It really helps. I started out with the Cr Ambien, but I am down to 5mg, but I can understand getting excited for 5 hours of sleep!

Thanks badhbt...I'm glad Ambien is helping you with sleep. Am sure you get the excitement of 5 hours of sleep. Thanks for sharing.

I'm a weird one. Ambien makes me 'sleepless' at night. It has the opposite reaction. Fortunately doctors know about this, and they just nod their head...They've heard that the 'opposite reaction' to meds a lot.

Ambien will make me stay awake at night and my mind races. Weird, I know. Just glad doctors are familiar with this. My sister has the same reactions to sleep meds, (and she's healthy) so I don't feel so 'weird', but I do wish it worked for me. It would be a big help.

I have odd reactions to lots of meds...The most common reaction to almost all drugs is that I have to start at a very minimal dose and work my way up to a 'normal' dose. If I start at what's considered a normal dose, I'll have an 'opposite reaction'...Meaning if it's supposed to relax me, it will hype me up. And the opposite is true as well.

I just start almost all new meds with a small 'chip' and then use a pill cutter and slowly work my way up.

Thank you for sharing your experience with Ambien though. Am really glad it works for you.

Strangely though, I've 'revisited' Ambien during the daytime when I'm desperate for a nap, and a micro dose seems to help with a daytime nap. At night though...Not.

Maybe it's because I take other meds at bedtime, but for whatever reason I've not had a good experience with Ambien at night, but recently have had some success with taking a small amount alone for a daytime nap...About 50/50.

So glad it's helping you!

K

[Psalm 23]

Hi kitt,

I'm so glad to hear you were able to get 5 hours of solid sleep night before last (and not have a sweating problem ). That's great. I hope last night was a repeat of the night before and that a pattern of longer sleep times begins to develop. I know besides feeling especially ill from lack of sleep the monotony of what seems like an endless night is truly agonizing.

I know 1800mg seems like a lot. I actually tried to reduce it to 1200mg a few months ago but I couldn't deal with the increase in pain and the lack of sleep again. I have been on and off neurontin since 2006/2007 when it was originally prescribed for shingles pain. Since then I have needed it intermittently for neuropathic pain but not in that high of a dose until earlier this year when I developed typical sfn pain ( burning feet etc ). Unbroken sleep was an unexpected and very welcome benefit. I am sorry to say that for me I was not able to obtain the huge improvement in sleep until I reached the 1800mg dosage. It is surprising to me that I am able to tolerate the high dosage I am on considering my intolerance to most medications. At some point I will probably try decreasing the dosage again as I really don't like taking this much medication however for the moment I will just be happy to have some degree of pain control and a solid nights sleep.

Kitt I'm glad to hear you usually get a presyncapal warning. It's nice to be able to react at least most of the time and not hurt yourself. As for the other times that must be so frightening. The last time I had a syncapal episode I hit my head really hard on a wall and then the floor. I'm very stubborn, I just continued to ignore warning signs. I don't do that anymore. Lol. I do have to be careful about not making the shower too hot which is hard to do because it feels so good. The arm raising problem is still so weird to me. I seem to be troubled the most with that when I am trying to blow dry my hair which I spend far too much time doing. I am always sitting down for that of course.

I have heard the same thing about the effectiveness of medications wearing off. I'm always wondering if that will eventually happen with any of the ones I am on. Oh, there was also one other med I tried for sleep that didn't go over too well. It was called Intermezzo. Not sure if you have ever tried that one. It's supposed to help those that are able to fall asleep but not stay asleep.

Here's to a good night.

Janet