Self-diagnosed

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Back to basics?

Post by sardsy75 »

I'm wondering if i should add a sleep test to my "list of things to ask for/about" on Saturday.

A proper sleep test has not ever been done on me. I've been poked, prodded, drained of blood, x-rayed, and mri'd....but not actually hooked up to anything to measure my sleeping habits. I think it would be a rather interesting exercise.

My list already includes: bloodtests & followup chest x-rays. Dang cough has returned and is getting worse.

Eeek, it's way past my bedtime (12.35am).

Jumpy, your test sounds like it went quite well, i.e. no nasty surprises.

Be careful on the roads!

Night all
Nadia
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

jumpyowl
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Cardiac episodes

Post by jumpyowl »

As I promised I briefly discuss two episodes of cardiac arrythmias that occurred in "loose" connection with my RLS saga. Or it could be no connection at all.

When I started taking hydrocodone (two and a half weeks ago), almost immediately after swallowing the pill) I had palpitations. These lasted a good 15-20 minutes. If I took a low dose of propranolol (beta blocker) they diminished. I assumed they were from hydrocodone.

Last Friday after I came back from my second visit to my doctor I lied down to rest. As I felt a vague sensation of rapid heart beat (not the hammering type) I took my vital signs. Pulse 124 1/min, BP normal.

I took 30 mg of propranolol (triple my normally low dose) and in 15 minutes I took my pulse again: 128 1/min. This lasted for an hour. Then I took my blood pressure which by that time soared up to 160/110. That concerned me so I called emergency and they wanted me to come in. I told them that I will try one more thing and if that does not help, I am coming in. I took some tranquilizers (Ativan) and the quite suddenly the vital signs stabilized. The pulse suddenly dropped almost to half and soon after the blood pressure became 110/67.

On the afternoon prior going to the sleep lab I had a resting heart beat of 134 1/min. Propranolol brought it down to 124. Blood pressure remained normal. Eventually I took a benzodiazapine that brought it down to normal. During the sleep test my heart beat rate was normal although the beats doubled up a few times. However, this normal pulse could have been the after-effect of the bezodiazapine which was a long-acting one.

I wonder if others have arrythmia caused by RLS attacks or medications? I am guessing that mine is the ventricular type. BTW I have taken some potassium as I occasionally tend to be hypocalemic and magnesium. They help with minor arrythmia but not with this persistent tachycardia.

The more I think about this the less I believe that this arrythmia is due to hydrocodone I take regularly or the anticonvulsant I take occasionally. It could well be stress-related but then this is a deep stress I am unaware of.
Jumpy Owl

jumpyowl
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Afterthoughts and events

Post by jumpyowl »

I am still on hydrocodone, but it is now two pills twice a day. But I also started on Klonopin a long lasting benzodiazapine (0.5 mg) one a day instead of Ativan (lorazepam). Also try to have less stress in the family. Happy to report that the palpitations have not come back. :)

I took Topomax this morning instead of Hydrocodone, and will take it tomight again (that is the normal dosage 2x25 mg). See if I can exist with less or no hydrocodone. I am doing this because: I just learned that Neurontin (the other anticonvulsant) is not quite compatible with Hydrocodone. I am not sure whether the same is true for Topomax, so some experimentation is in order.

Let you know what happens. 8)
Jumpy Owl

jumpyowl
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MOMENT OF TRUTH

Post by jumpyowl »

Well, ladies and gentlemen, here are the results of my sleep test.

(I do not care who knows my medical problems as long as people learn from them, so here I display the report. My comments are in parentheses)

CLINICAL DATA: 69 year old male, 70 inches tall, 228 lbs. The patients complains of excessive daytime sleepiness and snoring that disturbs others (I did not complain of snoring). Medical problems include hypertension, cholesterol, acid reflux disease occasionally. (The truth is that I do not have hypertension even though I was treated for it for 20 years, I have slightly elevated cholesterol, and no acid reflux disease, so much for medical record accuracy). The patient has had prior tonsillectomy (true at the age of 4, the doctor thought I would gain weight better :? )

EPWORTH SLEEPINESS SCALE SCORE: 9 (I have no idea how they determine this and what it means)

MEDICATIONS: Hydrocodone qhs, lorazepam 0.5 mg bid prn, propranolol prn for tachycardia

DESCRIPTION: patient was studied overnight at the sleep center with multichannel polysomnography attended by a poly somnographic technician. He was in bed 382 minutes and asleep 341 minutes for sleep efficiency 89%. Latency to sleep onset was 5 minutes was 5 minutes. All (5) stages of sleep were recorded. Sleep architecture was normal. There were 3 brief REM episodes during the study.

The technician reported moderate snoring (5/10) with occasional snore arousal. No bruxisms. (not at this time).

There were no apneas or hypoapneas recorded during the study. Oxygen saturation stayed at or above 94%.

No PVCs were recorded.

The most remarkable finding during the study was frequent periodic limb movements of sleep causing arousal (self-diagnosis proven!)

IMPRESSION:

Normal sleep architecture with no evidence of sleep apnea. (you may bring on the opioids :) )

Moderate snoring and occasional snore arousals.

Severe periodic limb movements of sleep. (PLMS)

Chronic leg pain inadequately controlled with hydrocodone (just as I told my doctor prior to the sleep test)

RECOMMENDATIONS

Neurontin 300 to 600 mgs qhs for periodic limb movements of sleep.

Relaxation techniqes and soaking legs in warm water before bed time may be of benefit.

Conditional or alternative pain medication to adequately control leg pain.

Oral appliance for mandibular advancement can be used for snoring, or uvuloplasty by an ENT surgeon would be an alternative. However, patient's snoring and breathing do not appear to be his primary problem interrupting his sleep. Treatment would be cause matic (sic) (cosmetic)only.



Well, this is it folks! It looks like I am to be given a chance to try Neurontin. What the alternative pain medication will be I have no idea. Hopefully not hydrocodein but if it is I will need a tranquilizer with it.

I am not planning to do anything about snoring except possibly lose some weight. :P for uvuloplasty!!!

I will call my gate keeper on Monday and find out what he comes up with.

Happy REM and especially stage 4 sleep.
Last edited by jumpyowl on Thu Jul 08, 2004 2:30 am, edited 1 time in total.
Jumpy Owl

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

Jumpy, I am interested in the arrythmia heart problem. I have episodes where my heart seems to do a slow beat then a couple of fast ones to catch up. I have had a monitor on for a couple of weeks and a heart cathiter done (no blockages). Seems I have a slight problem but not severe enough to warrant treatment. (My sister is head nurse for a cardiologist). I really never thought to connect it with medications. This started before the Neurontin and Wellbutrin. I take Mirapex but I haven't heard anyone else having palpitations, etc. This is not a constant problem, just every once in a while. What do you think? Could it be related to RLS?

jumpyowl
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I do not know.

Post by jumpyowl »

Sorry, Ruby. Arrythmia is fairly common and often does not mean much. But the truth is there are certain types that can result in cardiac arrest (which is usually fatal as opposed to heart attacks). I am researching it and will get back to you.

Sweet dreams! :)
Jumpy Owl

jumpyowl
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On Neurontin

Post by jumpyowl »

Just to keep you fellow sufferers up-to-date:

Instead of waiting for the doctor's office to call me, I called Monday morning and made an appointment the same day.

The doctor asked how he can help me and I told him if he does not know it we are both in trouble. :roll: Of course, this was a tongue-in-cheek- remark but I also thought I sensed that he was not taking the morbidity (sounds better than discomfort, does it not?) of this disorder seriously enough. He was perturbed for a moment than mumbled something that this is just a classical opening statement to patients when he walks in. :oops:

Then he looked at the report of the sleep study and agreed that I should take Neurontin 300 mg. once an evening for as week than double it for the rest of the month. Since he showed no inclination to write a prescription for it, I asked him. He was suprised that the doctor of the sleep center (whom he knows) did not write it. I told him I have not seen the doctor only the sleep technician (between the hours of 7:30 pm and 6:00 am). So he the did write the prescription even if somewhat reluctantly.

Then we chatted and he made it clear that if this does not do the trick he is passing me on to the sleep doctor, since this is out of the field of his expertise.

We did talk about palpitation as an after affect of hydrocodone. He was not familiar with that effect. Then he did listen to my heart after I told him about the two arrythmic episodes of tachycardia that did not respond to beta blockers. He agreed that it was adrenalin (stress) induced as it responded to lorazepam. He also asked me about skipped heartbeats and disturbances in the heart rythm, but apparently was satisfied that they were not the deadly ventricular fibrillation type.

Last night I took the first dose of Neurontin. Did not feel any unpleasant side effect. Thirty minutes later I did take a hydrocodone (5/500) and slept the night through. This was an improvement to the previous night.

Let us hope it keeps up. :wink: And for you all, too.
Jumpy Owl

jumpyowl
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Neurontin

Post by jumpyowl »

Well, this is my drug schedule with regard to neurontin:

Monday: 8:30 pm 1 300 mg capsule Neurontin
04/26/04 9:00 pm 1 Hydrocodone 5mg/500mg

SLEPT UNTIL 6 AM

Tuesday: 3 pm paresthesias 1 300 mg capsule Neurontin also
1 Hydrocodone 5mg/500mg
has taken 30-40 minutes to work

9 pm 1 300 mg capsule Neurontin also
1 Hydrocodone 5mg/500mg
woke up at 2 am with some pain
1 hydrocodone 5 mg/500mg
1 mg lorazepam

SLEPT UNTIL 7:30 am

Wednesday: same experience early afternoon paresthesias

1 300 mg capsule Neurontin also
1 Hydrocodone 5mg/500m

9 pm 1 300 mg capsule Neurontin also
1 Hydrocodone 5mg/500mg
_________________________________________________________

Note that I have been prescribed Neurontin one 300 mg capsule every evening and hydrocodone if needed for one week. The second day I already doubled the dose of neurontin as I needed it in the afternoon due to the apperance of a fairly severe paresthesias in both legs.

It is too early to tell the difference: but Topamax 25 mg pill (also an anticonvulsant) I only had to take once in the evening and only after several days I took one in the early afternoon. Even though Neurontin had no unpleasant side effects so far, I can feel in my head I had taken it (if that makes sense). Topamax caused no such awareness.

We shall see and I will faithfully report the results.
Jumpy Owl

jumpyowl
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Rest of the sleep report

Post by jumpyowl »

I am not ecstatic about Neurontonin yet. It also seems like my symptoms come earlier and earlier each day. And it is too darn early for augmentation. But it is also early to form an opinion about neurontin, so I postpone discussion on that for later.

I was in town yesterday and dropped by the sleep clinic. The secretary to the doctor was the ex-wife of a physician, so she understood what I was trying to achieve: to better communicate with the doctor.

She showed me my file which was considerably thicker than the cover letter I received in the mail. She was kind enough to make a copy.

There were some additional things of interest in it including the hand-written scribble of the doctor:

I found the sleep stage statistics of interest:

I spent 8.1% in stage 1, 59.6% in stage 2, 16.8% in stage 3, and 8.3% in stage 4, which is the deep restorative sleep. (out of a total sleep time of 341.5 minutes, 5 hrs, 42 minutes). My REM sleep was 7.2%.

Actually the oxygen saturation of haemoglobin as a mean was 96% and the range 94-98%.

I spent 79% of sleep time on my right side, and the rest prone.

I had PLMS jerks 181 times, jerks with arousal 103, no jerks with wake, jerks with no arousal 78. I even had jerks during the REM period (3).

Technologist Comment: Restess leg movements during awake, isolated leg movements, PLMS, and associated arousals were present.

Physician's comment: (handwritten):

No OSA, 'something' oxygen (probably plenty of), severe PLMS. :cry:

Then he suggested extra pain medication and neurotontin. Guess who did not get the extra pain medication? :roll:
Jumpy Owl

jumpyowl
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Step-up Neurontin

Post by jumpyowl »

Yesterday was the first evening when I took a full dose of neurontin (600 mg). I did not take any during the day. I can do that but I must not lay down after lunch (siesta). Paresthesias, pain come and I do not feel very good (malaise). :(

The full dose worked a bit better. Still had to take a couple of hydrocodone pills. As I went to bed earlier I was wide awake at 2:30 am. At that time I took 0.5 mg Klonopin and slept 'til the morning. :)

Today again I managed not to take any Neurontin during the day (one hydrocodone did not quite do it so I just got up), so I am looking forward the two capsules tonight. :oops:

And a good night to everyone!
Jumpy Owl

jumpyowl
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Topamax, again!

Post by jumpyowl »

One of the big problems with prescription suppliers (physicians) and with patients to a certain extent is that once they start on a medication, they get stuck on it. If it has bad side effects that instead of discontinuing the drug, they take another drug for the side effect. And so on, and so on.

I have mentioned my brief but successful experiment with Topamax. Ever since I have been on the lookout to see whether some fellow RLS patient is using this drug or not. Just today I found this post below in one of the yahoogroups.com:


First of all, I'm not nearly as educated about these dugs as you are but here is how I feel: I took Baclofen for back pain, by the time I took enough for it to do any good (40 mgs) I was groggy all the time. I tried Mirapex and drugs like it.. NO WAY (for me) then I tried an anticonvulsant... finally got to Neurontin where I got some relief but not enough. Higher doses of Neuron left me "druggy" So I went back to Phenobarbitol which works! (for me) I haven't be able to ween off the Neurontin though. It seems like all the augmentation that the other drugs caused has brought my RLS to a whole new level........but with both drugs and zanaflex (which I started taking for back spasms) and Topamax that controls headaches Phenobarb causes, I have my life back!



Well, here is this lady, who has taken Neurontin but made her feel too druggy, so she went back on Phenobarbitol! She is still on Neurontin, and now she also takes another anticonvulsant, Topamax, [which itself could take care of her symptoms without feeling druggy (it is not well known as I discussed this elsewhere)], just to fight the side effect of Phenobarb! :?

I just wonder :idea: whether she would be just as symptom-free with only a low dose of Topamax and possibly either Hydrocodone or a benzodiazapine? Taking a second anticonvulsant just to negate the side effect of phenobarbitol seems an overkill to me.

BTW the manufacturer of Topamax still has not contacted me. They probably do not now what to say, since according to their own drug report Topamax causes rather then negates paresthesias :shock:
Jumpy Owl

jumpyowl
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Neurontin vs. Topamax

Post by jumpyowl »

Well, this is the start of my third week on Neurontin. If one recalls, the first week was one 300 mg capsule in the evening, then I was supposed to double that dose to 2 capsules (600 mg) also in the evening.

The first week was uneventful, not much relief. :? I actually started to take another capsule during the day because it was needed. When I doubled the dose after the first week, the first few days the effect was more obvious, no exciting hallucinations, but my head felt a bit "stuffed" and the effect was more pronounced. :) Still I had to supplement with hydrocodone. I usually woke up around 2 am. But when I added 0.5 mg Klonopin (a benzodiazapine) I could sleep until the morning. :o

But..., but..., and then again but! What I started to observe after a few days during the second week was that in the afternoon I started to have the symptoms, earlier and earlier, and more and more intense! :x It was too early for augmentation, and Neurontin is not a dopamine agonist anyway, so I stuck it out until today. :roll: Today I woke up with intense pain in my right leg (I sleep on my right side) and the whole leg was stiffened up.

Walking about helped the pain but some residual pain stayed with me. Then paresthesia raised its ugly head even though it was not even noon yet! I took two (7.5mg/650 mg) hydrocodone and laid down. Then it hit me with full force! Actually I have never had it so bad! I kicked everything off the bed, tossed and turned but it did not help. :cry:

So I thought, heck with sticking out for two more weeks on Neurontin just "to give a chance for the drug to work." This could no longer be a coincidence as clearly my symptoms were getting worse and earlier in the day.

So I got out of bed, popped 25 mg Topamax in my mouth, and went to work. Even though I was seated most of the time, I started to feel gradually better. Now it is 7 pm and I still feel pretty good. :)

Guess what I am going to take tonight instead of 600 mg of Neurontin? That is right! 25 mg of Topamax. If it will not be enough (due to quitting Neurontin cold turkey) I will double the dose. But somehow I think (feel) it will not be necessary. 8)

This is not an anticrusade against Neurontin. Neither it is a sales pitch for Topamax. However, I will not be discouraged from experimentation with the latter just because even the makers of the drug Topamax do not believe it is useful for RLS/PLMD. :P

Nadia was also in my mind when I decided to cut short of my Neurontin drug trial. If one's body is telling one something repeatedly, emphatically, and reproducibly, eventually one had better listen to it, no matter what the doctors or the Precautions of the Drug Monograph say.

I shall let you all know tomorrow how my night and the following day will have gone without Neurontin.
Jumpy Owl

sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Stay positive

Post by sardsy75 »

My dear Jumpy

The last thing my GP said to me this afternoon was "chin up!" :? Easier said than done...don't I know it :wink:

I've been following your progress over the past couple of weeks and have been saddened to see that you have not been able to find any relief - particularly with the Neurontin.

I know that somewhere out there is a "magic potion" for each of us, we just have to find it.

A bit of courage and a LOT of patience is needed during these times and I'm sending you lots of "positive" thoughts to help keep you going.

Good luck and God Bless

You are in my thoughts always.

Nadia
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

jumpyowl
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SWITCH, cont.

Post by jumpyowl »

Thanks, Nadia, you are a dear! And all that while you are suffering. :oops:

So back to my "risky game":

Guess what I am going to take tonight instead of 600 mg of Neurontin? That is right! 25 mg of Topamax. If it will not be enough (due to quitting Neurontin cold turkey) I will double the dose. But somehow I think (feel) it will not be necessary.


Sure enough, I took a 25 mg dose of topamax last night instead of the 600 mg of Neurontin (gabapentin). Then I was waiting with baited breath for the attack to come. To tell the truth I was a bit scared.

In about twenty minutes, I started to get the paresthesias but gently and I did not have the dull feeling in my skull. Now I had to choose:

a/ take another Topamax despite the Precaution that the drug itself can cause paresthesias as a common side effect, relying on my instinct or

b/ should I take 300 mg (or 600 mg) Neurontin prescribed for me by the doctor and risk another augmentation next day?

It was not an easy choice, let me tell you, :roll: but the researcher won over the patient's mentality. I took another pill of Topamax. Then I also took an opioid to ease the transition from one type of anticonvulsant to another.

I woke up once during the night around 4 am, read a bit, then fall asleep again. Unlike on Neurontin (when I would not wake up until 6 am) my mind was clear and there was no malaise. The most surprising thing was that next (this) morning I woke up almost without pain in the limbs (compared with severe pain in the right leg and hips yesterday morning).

Today after lunch I took another Topamax (25 mg) and Hydrocodone and slept an hour with absolutely no paresthesia or pain.

Now as evening approaches I am looking forward to another dose of Topamax with Hydrocodone and a good night sleep. I am not going to risk another Neurontin augmentation.

How I am going to explain all that to my doctor in two more weeks is another matter. :shock:

It is perhaps early but I will summarize: I have RLS and severe PLMD as determined by polysomnography. For this I was prescribed Neurontin and Hydrocodone. Once after one week I was titrated up to 600 mg of neurontin the symptoms were well controlled as long as the drug was in my system. However, within another week on full dose I observed a severe rebound effect as well as an augmentation of the symptoms both in pain and paresthesias. What I did not have with Neurontin were hallucinations or nightmares. There were no dreams at all. However, I did have a certain degree of general malaise, plugged up "cotton" head, and earlier and earlied exacerbated symptoms the next day.

This sad state of affairs apparently could be rapidly reversed with another anticonvulsant, called Topamax (topiramate) which is also an antiepileptic drug approved to be used in children as young as 2 years old. It is also used for pain. Its precise mechanism is unknown, but the following is known: it blocks voltage dependent sodium channels, augments the neurotransmitter GABA, antagonizes a glutamate receptor, and inhibits the carbonic anhydrase enzyme, particulary isoenzymes II and IV. This latter is supposed to be related to the side effect of causing paresthesia.

But you could not prove this by me, as for me Topamax eliminates paresthesia at least at starting dose levels (25-50 mg). Adult dose levels for this drug are 200-400 mg/day.
Jumpy Owl

jumpyowl
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Doe Neurontin enhances pain?

Post by jumpyowl »

Another day is gone. Last night I took another pill of Topamax (25 mg) plus 2 hydrocodone. Similar results.

Today I did not have a nap and took no medication during the day. Tonight I plan to take one or two Topamax and two hydrocodone.

I researched Neurontin whether it can cause pain. It was advised that Neurontin should be taken three times a day in equal doses for minimum side effects. Since I was taking it only in the evening at 600 mg, one could assume that by morning it would appear to the body as if the drug was discontinued (temporarily), hence the pain (augmented) upon awakening.

Well, I guess the jury is still out. I like the lower doses of Topamax since it has a beneficial effect at 1/10th to 1/5th of the average dose.

I will drop by the sleep lab tomorrow as I will be in town anyway and see whether I can pick up some info on Neurontin.
Jumpy Owl

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