Finally Diagnosed!

Whether new to RLS/WED 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.
kk46504
Posts: 5
Joined: Fri Dec 29, 2017 3:39 pm
Location: Pflugerville, TX

Finally Diagnosed!

Postby kk46504 » Fri Dec 29, 2017 4:41 pm

Hi all! I have been suffering with widespread itching at night off and on for 3 years now. No one had been able to figure out why, but a new neurologist this morning diagnosed me with RLS and prescribed me Requip. I'd been on Gabapentin and Hydroxyzine all this time and the symptoms still come and go. I don't sleep well, sometimes for days on end. The sparks and zaps, as I like to call them, cause me to twitch and thrash around at night, and always start just as I'm falling asleep. It's torture to be jolted awake by a zap on my foot or leg. He says that my anxiety intensifies the RLS symptoms, so I feel things more intensely than I should. I thought for so long I was crazy, and thought there was no hope for me. I'm so glad I'm not the only one with this. It's taken such toll on me emotionally. I'm glad there's support available.

Restless Dragon
Posts: 33
Joined: Mon Oct 30, 2017 10:06 pm

Re: Finally Diagnosed!

Postby Restless Dragon » Fri Dec 29, 2017 4:59 pm

Congrats kk! Let us know how the new meds work out

Rustsmith
Moderator
Posts: 3015
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Finally Diagnosed!

Postby Rustsmith » Fri Dec 29, 2017 6:55 pm

Glad you were finally able to get a diagnosis. I wish that you experience of waiting 3 yrs was unusual, but sadly it is fairly typical. Also, don't expect your neurologist to be an expert in treating RLS. A few of them are, but many only have a rudimentary knowledge of what to do.

As an example, your hydroxyzine is a first generation antihistamine medication. First generation antihistamines are very often strong triggers for RLS symptoms. Since you were given this to treat other issues, you may want to talk to your doctor about swapping it for a second generation antihistamine. Second generation antihistamines do not cross the blood brain barrier, so they are less likely to be RLS triggers.

Another suggestion is to ask to have your ferritin levels tested. Ferritin is a measure of the iron stores in our bodies. "Normal" ferritin levels are anything over about 20, but RLS patients need to have values over 50 and preferably over 100 if taking meds like Requip.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

kk46504
Posts: 5
Joined: Fri Dec 29, 2017 3:39 pm
Location: Pflugerville, TX

Re: Finally Diagnosed!

Postby kk46504 » Fri Dec 29, 2017 8:31 pm

Hi Steve. Thanks for your reply. The Hydroxyzine was prescribed to me by the first neurologist I saw when I said I was itchy. The one I saw today told me to discontinue it. Either way my allergies are well controlled by my normal Allegra and Zyrtec so the Hydroxyzine may be overkill. I suppose it wasn't needed at all since the itching wasn't allergies at all. He is also going to check my iron stores as well. Thanks again for the reply.

ViewsAskew
Moderator
Posts: 15102
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Finally Diagnosed!

Postby ViewsAskew » Sun Dec 31, 2017 12:15 am

I have always had itching as part of my RLS. Other people rarely mention it - nice to hear that someone else has it that way, though I wish neither of us did! So nice to get a diagnosis, isn't it?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 4806
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Finally Diagnosed!

Postby badnights » Mon Jan 01, 2018 6:41 am

Hi and welcome to the board! I'm glad you got a diagnosis.

I will add a note of caution to what the others have told you. You may not need the Requip at all, and since it carries a high liklihood of causing augmentation, please determine if the other recommendations are enough on their own to improve your symptoms. One being Steve's suggestion to swap the old-gen antihistamine for a 2nd-gen one, the other being to get your ferritin checked and start iron supplements if your levels are below 100.

The reasons: the older generation anti-histamines will actually make RLS/WED symptoms worse, and they will trigger episodes in people who don't normally have it. Simply stopping that medication may be all you need.

Second: ferritin levels are linked to WED/RLS symptom severity. Low ferritin means worse symptoms. Simply raising ferritin levels can reduce symptoms to a bearable level. NOTE ferritin levels as low as 20 are regarded as normal for non-WED patients, but those of us with WED need to maintain higher levels of at least 75 and preferably 100 because iron either leaks out of our brains or can't get in (to be silly about the way I say it), even though it might be maintained at normal levels in our blood. If we add enough iron to our diet / supplements, our brains have an easier time keeping the iron they need.

third: Requip and other dopamine-type medications cause a dreadful phenomenon called augmentation in people with WED/RLS - or at least, in up to 75% of us over 5 or 10 years of use. Augmentation is worsened symptoms. You take the medication, after it kicks in you experience some relief, but the relief is shorter than before, and the next day your symptoms start hours earlier than they used to, they're more intense, they've spread to your arms and maybe even your torso. Augmentation of WED symptoms from dopamine-type meds is more likely the longer you've been taking the med, the higher the dose, and the lower your ferritin.

So plesae take this seriously, and see if elimination of the first-generation anti-histamine and raising of your blood ferritin levels to 100 is enough to reduce your symptoms. If it isn't, then at least be sure your ferritin is up before starting the Requip, to reduce your risk of augmenting.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

kk46504
Posts: 5
Joined: Fri Dec 29, 2017 3:39 pm
Location: Pflugerville, TX

Re: Finally Diagnosed!

Postby kk46504 » Tue Jan 02, 2018 3:39 pm

Thanks for everyone's replies. I'm glad I'm not alone in this. I will get my iron stores checked and am no longer taking the Hydroxyzine. I took the Requip starting last Friday, so that's 4 days so far. I've found that it works well, unless I wake up for some other reason. If I wake up and try to get back to sleep, the itching starts again so I'm not sure if that's typical or not.

badnights
Moderator
Posts: 4806
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Finally Diagnosed!

Postby badnights » Sun Jan 07, 2018 11:05 pm

If I chnage "itching" to creepy-crawly electrical sensations, then that happens to me. If I'm woken up for some other reason (dog noises, outside noises, have to pee) then sometimes lying back down again right away will trigger the sensations so I have to walk about for a while first.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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