Hi all,
Thank you for adding me.
I had RLS 3 years ago during my pregnancy as I took some antihistamines and then went away. After the pregnancy I started suffering from vestibular migraine and was put on nortriptyline. 2 years and a half after I started dropping the medication and went from 50 mg to 30 mg. Since dropping I started having this weird feeling in arms and legs.
Is this related?
In january I had an iron perfusion and my ferritin is 58 so I don't think that is the problem.
I really don't want to increase the nortriptyline again but I don't want this either
Hello
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Re: Hello
Welcome blueberry0
A ferritin level of 58 is acceptable for the general population but is still rather low for those of us with RLS. The usual recommendations are that your ferritin should be at least 75 and preferably over 100. Increasing iron doesn't help everyone (like myself), but there are a large number who benefit from increasing their iron levels. At a ferritin level of 58, you may benefit from oral iron supplements. The usual approach is to take a 325mg iron sulfate (65mg iron equivalent) pill along with a vitamin C tablet on an empty stomach. For some, iron sulfate can be hard on the stomach, so there are other compounds that are more expensive but cause less stomach upset. If you need to switch, make sure that you are still taking a dose that provides 65mg of iron equivalents. This will not provide immediate benefit since it can take a few months to build up your body's ferritin levels.
Of course, your other option would be to educate your doctor or hematologist about the ferritin requirements for RLS patients. There are publications available, which I am sure that others will provide you links to.
A ferritin level of 58 is acceptable for the general population but is still rather low for those of us with RLS. The usual recommendations are that your ferritin should be at least 75 and preferably over 100. Increasing iron doesn't help everyone (like myself), but there are a large number who benefit from increasing their iron levels. At a ferritin level of 58, you may benefit from oral iron supplements. The usual approach is to take a 325mg iron sulfate (65mg iron equivalent) pill along with a vitamin C tablet on an empty stomach. For some, iron sulfate can be hard on the stomach, so there are other compounds that are more expensive but cause less stomach upset. If you need to switch, make sure that you are still taking a dose that provides 65mg of iron equivalents. This will not provide immediate benefit since it can take a few months to build up your body's ferritin levels.
Of course, your other option would be to educate your doctor or hematologist about the ferritin requirements for RLS patients. There are publications available, which I am sure that others will provide you links to.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
Re: Hello
Hi Blueberry,
I don't think I quite understand. Do you have RLS now, or only previously and it went away? What problem do you have now? By "iron perfusion" do you mean extra iron given into your vein? And if so, what was the reason for the extra iron?
I don't think I quite understand. Do you have RLS now, or only previously and it went away? What problem do you have now? By "iron perfusion" do you mean extra iron given into your vein? And if so, what was the reason for the extra iron?
Blessings,
Holland
Holland
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Re: Hello
Hi and welcome! stjohnh has some good questions for you whic I am curious to see the answers to.
Are you saying that you're beginning to get RLS/WED again since dropping your daily dose of notriptyline? That's interesting because usually medications like nortriptyline don't help RLS/WED at all. What other medications are you taking?
Are you saying that you're beginning to get RLS/WED again since dropping your daily dose of notriptyline? That's interesting because usually medications like nortriptyline don't help RLS/WED at all. What other medications are you taking?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
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Re: Hello
Hi Thank you for the replies...
i had RLS during pregnancy and went away.
I started having RLS again after dropping 20 mg of nortriptyline. (not quite sure why)
Thank you for the advise on the iron
i had RLS during pregnancy and went away.
I started having RLS again after dropping 20 mg of nortriptyline. (not quite sure why)
Thank you for the advise on the iron
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- Joined: Tue Mar 10, 2009 4:20 pm
- Location: Northwest Territories, Canada
Re: Hello
Maybe the increase in WED/RLS was unrelated to the decrease in nortyptiline dose, only coincidentally happened at the same time. It could be a natural worsening in symptoms, or it could be related to another change that happened in your life at the same time.
Did you start or increase the dose of any other supplement or medication? a new food? a food with a new additive? a new drink?
Did anything about your life change - did you increase or decrease the amount of daily exercise you took? Was there a change of job, relationship, some kind of stress? Did you have surgery or some other procedure that increased your level of physical stress?
Did you donate blood, or bleed a lot for whatever reason? Blood loss often worsens WED/RLS, probably because it decreases our iron stores.
Did you start or increase the dose of any other supplement or medication? a new food? a food with a new additive? a new drink?
Did anything about your life change - did you increase or decrease the amount of daily exercise you took? Was there a change of job, relationship, some kind of stress? Did you have surgery or some other procedure that increased your level of physical stress?
Did you donate blood, or bleed a lot for whatever reason? Blood loss often worsens WED/RLS, probably because it decreases our iron stores.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.