Imitrex

[peglem]

We were referred to neurology again, and someone here recommended one, so I requested her. Feel like I hit the jackpot. She doesn't know what the heck is going on with my daughter, although, she was the one that brought up PANDAS.

Anyway, despite the valium I gave her, my daughter had a medium meltdown right there in the office (atta girl!).

But, instead of sending us to psychiatry for behaviors, this neuro said it looked like pain to her (me, too) and rx'd imitrex nasal spray. Well, the pharmacy had to order it so I wasn't able to fill it until today. All the way home from school Allie was screaming and thrashing and whamming...so I tried it out as soon as we got home. It took about 10 minutes and then she was not only calm, but happy and communicative! A few hours later she was starting to amp up again, so I gave her another dose- 10 minutes later, she's happy again.

 

So, I'm pretty impressed, but there must be a catch! Is it going to become ineffective after a period of use? Will I discover some nasty side effect? Maybe I should remain blissfully ignorant, but what has been your experience?

[trggirl]

Wow Peg, I can't answer your questions but I am intrigued and excited for you! It looks like it is a 5HT agonist. Have you tried 5HTP before?

Edited October 25, 2011 by Trg girl

[peglem]

Wow Peg, I can't answer your questions but I am intrigued and excited for you! It looks like it is a 5HT agonist. Have you tried 5HTP before?

Have tried 5HTP many times, but have never seen any effect at all. The really ridiculous thing is her pediatrician referred us to pediatric pain management a year or so ago and they told us to have the psychiatrist treat her because its behavioral. (after they talked with this jerk rheumatologist who had "ruled out" PANDAS, based on low titers). It feels so wonderful to have her pain taken seriously- I've all but given up on seeing new specialists and I was dreading seeing this one, too...so much heavy baggage I'm dragging around.

[trggirl]

Well I'm just so happy it is helping her and this doctor acts like she wants to get to the root of the problem. Hopefully her response to the Imitrex is a good clue as to what is going on and the doc will build on that.

[trggirl]

Ok, still thinking about this. If a 5HT agonist helps but 5HTP does not, then maybe there is a missing or low element that is used in the process of converting 5HTP to 5HT and therefore you are having a serotonin problem. Have you looked this process up to see what is needed in the pathway? A Vitamin or cofactor needed in that conversion? Just thinking aloud.

[peglem]

Ok, still thinking about this. If a 5HT agonist helps but 5HTP does not, then maybe there is a missing or low element that is used in the process of converting 5HTP to 5HT and therefore you are having a serotonin problem. Have you looked this process up to see what is needed in the pathway? A Vitamin or cofactor needed in that conversion? Just thinking aloud.

I like the way you think! That's something to check out. I wonder if histamine is involved- I think hers is low because antihistamines, even the H2 blockers, make her crazy. She's also got low IgE (which stimulates mast cells to release histamine).

[smartyjones]

i do not have experience with imitrex -- however, i do have experience with severe migraines with aura. and let me tell you, if i were non-verbal, i'd be screamng and thrashing and bamming too!

 

my understanding is that imitrex is usually used for migraines -- did the dr discuss why she chose that med? it may be interesting for you to research migraines, it may give you some clues into things that your daughter may experience in a neurological sense.

 

there does seem to be connections with migraines -- i don't know if it's just that migraines are a neurological issue and we're in the realm of neurology so there's similar pathways and effects or if 'migraine' is simply another label that is assigned to a set of symptoms, or its commonly co-morbid.

 

for me, the effects of the migraine are usually short term. however, i have had prodromal type with some level of symtpoms for days. i wonder if your daughter's neurology has her in some type of perpetual migraine-like situation? with various migraines, i've had extreme head pain; bizarre inappropriate concern about safety (during a blizzard and the news was urging people to have their outside vents cleared, during a migraine at this time, i was very worried); shimmery triangles in my field of vision; blocked vision like sun blindness; difficulting saying what i am thinking (the actual words); words not seeming correct -- like 'seahorse' to name a seahorse; extreme irritablity preceding a migraine; intense hunger preceding a migraine; numbness or heaviness in limbs; inability to properly move limbs due to numbness like foot falling asleep; intense tiredness.

 

do you remember a year or so ago, there was a newcaster who had a sudden migraine on air and began speaking jibberish?

 

i'm glad to hear you found something that may help and i hope it does continue to.

Edited October 26, 2011 by smartyjones

[EAMom]

Hi Peg,

I take Imitrex myself for migraines. It's great as OTC stuff often do nothing for my migraines (which might last for 3 days).

No side effects for me, although sometimes I have to re-dose after 2-3 hours.

 

You might also track Ally's behavior/possible headaches with her menstrual cycle, since for me, most of my migraines seem to be hormonally linked. I get most of my headaches before/during my period. I didn't get any migraines when I was pregnant.

Edited October 26, 2011 by EAMom

[trggirl]

Peg, have you ever had her neurotransmittors checked? It is controversial because the levels change constantly and regular doctors usually won't consider the results, but I have always felt that it is like blood sugars. They change constantly but if you get something way out of range, then you need to look at it. It could give you another clue. Anyway, just thinking aloud again. I feel silly even talking about it because I obviously don't have it figured out. Ha!

[peglem]

Hi Peg,

I take Imitrex myself for migraines. It's great as OTC stuff often do nothing for my migraines (which might last for 3 days).

No side effects for me, although sometimes I have to re-dose after 2-3 hours.

 

You might also track Ally's behavior/possible headaches with her menstrual cycle, since for me, most of my migraines seem to be hormonally linked. I get most of my headaches before/during my period. I didn't get any migraines when I was pregnant.

She seems to get worse during the 2nd half of her cycle-the 2 weeks before menstruation, then after the 1st day or 2 of her period, she improves. But, there are other variables that make things hard to track- like she is recovering from some URT infection right now- a cold? and then she has IVIG every 3-4 weeks, and has just started synthroid 12 days ago.

 

The neurologist also wants us to try a product called Migrelief:

Ingredients

Two Caplets Provide: Riboflavin............................................400 mg Magnesium..........................................360 mg PuracolTM (Feverfew Whole Leaf) .................100 mg PuracolTM contains high levels of parthenolide and assures the presence of all naturally occurring feverfew compounds which extracts may remove.

 

to help with prevention. We'll start that as soon as we get it. We ordered online for that.

[trggirl]

Riboflavin was an absolute amazing miracle for us for several months. My daughter had a downward spiral after getting flu last fall. We went to the doc and got many different things tested again. This time she came back with a low riboflavin level as well as some other things. The dose of the riboflavin that was recommended was hidden in the pile of paperwork I had and I accidently gave her 100mg (a whole capsule) rather than the 25mg recommended. I did this for a short time before discovering my mistake but by day 2-3 of the higher dose, my daughter's tics had stopped and she seemed so much more calm. This continued until we had to stop it when she broke out in a bad, spidery rash all over her body and I figured out it was the riboflavin. That whole experience still has me perplexed. Why did it help her so much and why did it ultimately hurt her??????

 

I would love to hear how it works for Allie.

[MomWithOCDSon]

If I'm not mistaken, Riboflavin is a B vitamin, correct?

 

Peg, have you been following any of the discussion on histadelia (high histamine) thread? LLM and I came across the same source for some information pertaining to high histamine (histadelia) versus low histamine (histapenia), supplements and medications best suited for each condition, key characteristics pertaining to people of each tendency, etc. All part of Dr. Pfeiffer's perspective, as I understand it.

 

Anyway, B vitamins are thought to be very important and helpful for low histamine people, while they can actually be problematic for those high in histamine. All of it plays into the "methylation cycle," according to these sources. Interesting stuff; I don't mean to hijack this thread, but what with Imitrex, migranes, histamine and B Vitamins all in the mix, thought this might be something to consider:

 

Pfeiffer Charts - Methylation, Histamine, Etc.

 

Glad the Imitrex is helping! That's awesome!

[Kayanne]

Ok, still thinking about this. If a 5HT agonist helps but 5HTP does not, then maybe there is a missing or low element that is used in the process of converting 5HTP to 5HT and therefore you are having a serotonin problem. Have you looked this process up to see what is needed in the pathway? A Vitamin or cofactor needed in that conversion? Just thinking aloud.

I like the way you think! That's something to check out. I wonder if histamine is involved- I think hers is low because antihistamines, even the H2 blockers, make her crazy. She's also got low IgE (which stimulates mast cells to release histamine).

Peg,

I'm really happy that you've found something that helps Allie. I have some friends who get migraines, and they like Imitrex.

 

I can't comment on histamine or methylation, but there definitely are certain co-factors needed to convert the amino acids into neurotransmitters. One of them is B6 in the form of P-5-P. It's not normally found in multi-vitamins. They usually have B6 in the form of Pyridoxal-phosphate (PLP).

 

A great resource is a free online book in a .pdf format. I don't want to directly link it in case it is against forum rules, but if you google A Way Up from Down by Priscilla Slagle, you will be able to download to the book.

 

It's just a great overview of all of the vitamins, minerals and supplements that can help balance out Serotonin and Norepinephrine. I know there has been a lot of discussion here about glutamate---I want to go back and see if she mentions anything about that in the book or on her website--I just haven't gotten the chance.

 

If you would like, I can pm you the direct link.

 

Good luck.

[peglem]

She's actually been on pretty high doses of B vitamins- we use SuperNuThera. Riboflavin is B2. But, I just read the SNT label- 422% of the recommended daily is only 7.5 mg. Wow, not as high as I thought.

 

Thanks for the link- I think I've glanced through it, but need to take another, thorough look.

[peglem]

Ok, still thinking about this. If a 5HT agonist helps but 5HTP does not, then maybe there is a missing or low element that is used in the process of converting 5HTP to 5HT and therefore you are having a serotonin problem. Have you looked this process up to see what is needed in the pathway? A Vitamin or cofactor needed in that conversion? Just thinking aloud.

I like the way you think! That's something to check out. I wonder if histamine is involved- I think hers is low because antihistamines, even the H2 blockers, make her crazy. She's also got low IgE (which stimulates mast cells to release histamine).

Peg,

I'm really happy that you've found something that helps Allie. I have some friends who get migraines, and they like Imitrex.

 

I can't comment on histamine or methylation, but there definitely are certain co-factors needed to convert the amino acids into neurotransmitters. One of them is B6 in the form of P-5-P. It's not normally found in multi-vitamins. They usually have B6 in the form of Pyridoxal-phosphate (PLP).

 

A great resource is a free online book in a .pdf format. I don't want to directly link it in case it is against forum rules, but if you google A Way Up from Down by Priscilla Slagle, you will be able to download to the book.

 

It's just a great overview of all of the vitamins, minerals and supplements that can help balance out Serotonin and Norepinephrine. I know there has been a lot of discussion here about glutamate---I want to go back and see if she mentions anything about that in the book or on her website--I just haven't gotten the chance.

 

If you would like, I can pm you the direct link.

 

Good luck.

Her SuperNuThera does have the P5P form of B6.