Hi, Charl here, Molly's mom with more questions? [smiley=huh.gif]
I would like to ask everyone to please respond and share their individual experiences with medications that either well work with or negatively affect MoyaMoya. For example: (cold meds, sinus meds, antibiotics, vitamins, Minerals, Safe headache and bp meds.)What have you found you or your children can and can not take? My daughter Molly had her surgery's in May and Dr. Scott said do not give her any medications that constrict the blood vessels(what does that mean????) :oI have been trying to get a list of meds together to be aware of but it is very hard to find out info. I was thinking I could get info from around the whole united states and multiple Dr's right here. I hope we can get a list of medications to be aware of dangers of  and a list of sucessful medications that will help in moyamoya. It could be a reference list for everyone!
Thanks, Charl :)

Hi Charl,
There are some medications for colds and flu like cough mixtures that can contain ingredients like Ibuprofen which will constrict blood vessels ie. shut them off so that blood flow is restricted. These medications are not recommended for people with mm. I do recall my doctors saying no to Sudafed for this same reason, but I am sure that if you contact a hospital which has treated mm cases like Stanford they would be only too happy to give you a list of medications that can or cannot be taken. Likewise your neurosurgeon should be able to do the same. I would like to help more but I am unsure if the medications we have in Australia are the same as those available in the US.
Moira

I asked my neurologists for a list such as this and they weren't too helpful apart from to agree with the 2 that i suggested:
- pseudoephedrine  (main ingredient of ALL colf+flu medications)
- the "pill" -> however the danger is mostly in the oestrogen levels so a high-progestrogen pill can be ok (they think)

i hadn't heard of the Ibrubrofen risks, well i hadn't had them confirmed anyway.
there are a few few cold + flu meds containing naturaly herbs and ingredients like echinicea and vitamin c etc..
anti-histamines (hay-fever) are fine.

what meds are most patients generally on? i'm currently on far too many for my liking:
- aspirin
- verapamil (anti-hypertension drug {i've never had blood pressure problems} which also works as a cerebrovascular dilator, seems to have some effect on narrowed mm vessels [they think])
- dilantin (anti-seizure) {i've never had a seizure}
- clopidogrel [plavix]
- nexium [partly anti-nausea, partly stomach-lining-protector]
- iron supplements (my levels are scarily low as of late).

all of this does my head in, at my next nuero appointment in a couple of weeks i'm going to request stopping the plavix and weening off the dilantin.. i'm not going to have seizure and it's having nasty affects on my liver... and i'm much less likely to have a stroke than a bleed and so the plavix is not necessary and too dangerous if you ask me [in general].

I dont believe Ibuprofin constricts the blood vessels.  Ibuprofin is a blood thinner.  So the danger there is that if you already are on a blood thinner - there is a risk of hemmorage with the intake of additional blood thinners.  I take aspirin - as such, I stay away from Motrin and Advil as they are both brand names for Ibuprofin.

Throught the past 2 years before Diagnosing of my MM I was on Cumiden(blood thiner) and Inderal(migraine) and the mini pill(bc progestigen only). Then I didn't like the INR thing so I had them swich me to Plavix(thinner) and 325mg Asprin.
Post Op: I was on 325mg asprin, Topamax(migrain) insted of the Inderal. Then the Horrers of trying to find and antidepersent settling on Prozax. Still on the pill.  
3months ago I have willed myself off the Prozax and Topamax and asked to be on only 81mg of asprin.
Today the pill,81mgasprin and that is IT!!

Through the coure of that time I had a few colds and did 1/2 dose of Cold meds with the pseudoephedrine in them but that made me sleepy faster then I normaly get. I am allergic to Penicillin so I was on that 5 day "Z" pack antibio for strep.

I forgot me Calcium suppliment everyday pre and post op. also there was the constipation for the percisets(sp) pain killers after surgey that I needed "help" with so I take something to make it looser.

Hope this helps
Becky

Hi All,
I was actually thinking of pseudoephedrine and I put down Ibuprofen!! There's the memory lapse for you! Sorry about that.

I had my surgeries 6 years ago now and no longer take ANY medication except for occasional headaches.
My neurologist did say that low dose Prozac will allay the onset of headaches, though I do still favour my heavy duty pain killers.

Emily, I was only on Dilantin while I was in hospital following the surgeries - I'd be asking questions when you see John.
I stopped taking Aspirin about 3 years ago on advice from my neurosurgeon and everything is fine - my MRI's constantly come back as A-OK as far as blood flow goes.
The only meds I take are a progesterone only pill that my ob-gyn put me on after the birth of my son 3 years ago. So I seem to be the exception to the rule as far as meds go.
Moira

yeah i've asked several times to be off dilantin, woulda stopped it myself but you have to be "weened" off it and i dunno what the dangers are of not doing that properly.
but i'm seeing my neuro on the 28th and john a week later so i'll be strongly suggesting/requestion to be off it, and the plavix.
my liver is currently inflamed about 5 times it's normal function, and i just dont think i need the plavix.. i'm a bit over so many on-going pre-cautions..

Hi Molly's Mom  :) My Dr. told me not to take Any Meds without asking her First..........Then the Pharmists would be able to tell you what you can take with the other meds you already take........I took Nyquil one night when I couldn't get into my Drs. till the next day and my blood pressure was sky high and that's when she told me not to take anything without asking first............Hope this helps   Elaine

Charl,
  As far as my understanding No over the counter meds except coricidan HBP for colds and such at all, and absolutley no birth control pills of any kind. Just about every person on this site I believe is on asprin one a day for life, it makes sense to thin the blood to get better flow. Mandy takes an ecotrin 325mg a day, straterra 2x a day for her attention which was affected by her strokes, neurotin for pain that her brain tells her shes having when she is just touched on her bad arm although it is just touch, carbotral because she had one seizure, she just went off zoloft. Mandy had several strokes though so she has alot of set back from those.
                             Nancy

charl,

Any decongestant is out... we never give them to Daphne (we didn't even before her MM diagnosis, due to their potential to increase seizures).   Any seizure medicine that sedates too much (i.e. phenobarb) is bad because it can lower blood pressure -- less perfusion to the brain.  Seizure meds that affect blood clotting (i.e Depakote) can be a problem if you're taking aspirin.   High dose sterroids can be bad because they raise blood pressure (Daphne has been on Phenobarb, Depakote, sterroids and many others before we knew of her diagnosis)

Daphne takes Neurontin for migrains, and has had some success with it.  

She is also fine with tylenol, motrin and cough medicine that does not have decongestants.  We use a vaporizor by her bed when she has a cold.

Also, we have used Cod Liver Oil for quite awhile.  It is supposed to be very good for the cardiovascular system ... strengthens arteries, nourishes the brain and helps prevent blood clotting.  We give Daphne a teaspoon a day. It also has vitamin d, so is good for the bones. Nordic Naturals makes flavored oil, and also capsules you can get online or at a health food store.

Besides being careful of what meds we use, we have learned that nutrition makes a huge difference in Daphne's life.  We try to be careful about anything we put into her.

Jenny

[smiley=laugh.gif]  I just reread my post.  A "teasthingy"????   I meant a teaspoon  [smiley=oops.gif]

Don't know where that came from!

>:(   a tea SPOON  where does "teasthingy" keep coming from??? LOL [smiley=confused.gif]

Sorry [smiley=blush.gif]

Hi There, I am a pharmacist for 23 years with PharmD degree.  My sister has Moya Moya.  Here are the meds that I have cautioned her to avoid:

DECONGESTANT MEDICATION (cerebral vasoconstriction)

ESTROGEN-CONTAINING ORAL CONTRACEPTIVES (clotting, ischemic stroke).

TRIPTAN medication for migraine headaches (causes cerebral vasoconstriction).  Prior to the official diagnosis, she was misdiagnosed as suffering from "atypical migraines," and given sumatriptan (Imitrex), which caused "a squeezing, burning feeling"  in her head.  She listened to her body and refused to take it again.

SEROTONERGIC MEDICATIONS:
    Serotonin is a potent "vasoconstrictor amine."  The use of meds that increase serotonin in the neural synapse may cause cerebral vasoconstriction.    
    This is more of a concern is if combining a serotonergic med with another med such as a triptan, which causes vasoconstriction by a different mechanism (you get an additive effect).
    Meds to be aware of include:
    SSRIs (Prozac, Lexapro, etc) and any medications that increase SEROTONIN in the neural synapse (tramadol, St John's wort).

I will try to help with med questions but can't promise quick answers because I research questions thoroughly (and have to find time for it between work/family, etc).

Very helpful, Gail.  Thanks a million!

-Shari

Gail,

Would you include NSRIS meds as well. Something like Wellbutrin (SR/XL, etc).

Thanks,
Greg

Thanks for the feedback, Shari!

Great question, Greg!  In answer to your question......

As I mentioned before, it is wise for MMD patients to avoid increasing SEROTONIN in the neural synapse, as it causes cerebral vasoconstriction.  SSRI medications INCREASE serotonin by preventing its reuptake into cells.  

Here is an outline of the mechanisms of the newer antidepressants, which I categorize as "SSRIs" and "Others." The "Others" either do (Effexor, Serzone) or do not (Wellbutrin) increase serotonin in the neural synapse.  

1) SSRIs: (selective SEROTONIN reuptake inhibitors) include Fluoxetine (Prozac), Paroxetine (Paxil), Sertraline (Zoloft), Fluvoxamine (Luvox), Citalopram (Celexa), Escitalopram (Lexapro).

"OTHERS:"
   
2) NSRI (norepinephrine + SEROTONIN reuptake inhib.)
   = Nefazodone (Serzone)

3) NSDRI (norepinephrine, SEROTONIN, + dopamine
   reuptake inhibition  = Venlafaxine (Effexor)

4) NDRI (norepinephrine + dopamine reuptake inhibition)
       = Buproprion (Wellbutrin)

Two points:
    1) Reuptake inhibition INCREASES the availability of the neurotransmitter at the neural synapse (by preventing reuptake into the neuronal cell).
    2) Buproprion is the ONLY antidepressant for which serotonin is NOT involved.



My dear sister just received her diagnosis (FINALLY) this week (age 45, symptomatic x 5 years).  I am so glad for this site and look forward to jumping in with pharmacy-related contributions as we travel this road together.  


Gail Tsolirides, PharmD

Hi guys,
this is my first post. I am Gails' sister Diane / aka Lotsofkids.

Just wanted to say hello and hi to Gail too....I will intro myself in the next coming days.

One more official Moyamoya to add to the group (gotta warn ya tho....I am a jokester and will be one of the troublemakers here!) Positive spirits is my frontal attack.
I'm 45 and three weeks ago had emergency heart surgery (a pericardectomy) and then because I had a couple of mini strokes they found the moyamoya! It's been some month!
Oh yeah, the "lotsofkids"....they are 5 lovely kids that are my absolute  joy.  :)

smiles....Diane

Charl here :D,
Thanks everyone the information is wonderful!! Thanks Gail I never imagined we could get info from a pharmasist, Thanks so much :o. I hope everyone continues to respond and offer their wisdom. We must share our wisdom and learning experiences with each other to keep us all safe. Thank you all for taking the time to respond. 8)
                             Charl and Molly

I took relpax a triptan before my stroke. I had a super migrane right after my honeymoon in Disney world. Not to frighten you all, But I didn't feel like my self after going on the Mission Mars or was it Space. The new space ride at Epcot. Well the doc just gave me Relpax to help with the ever getting stroger migraine and the person who dignosed me with MM said that the he would have done the same. So I can vouch for the NO Triptans!!
Becky

We are adding another one to the no no list.  Destin took 2 Midol caplets for cramps on Friday and her BP went sky high.  Scared her death!  We'll be looking for an alternative to Midol for next month!

I think Midol is a form of ibuprofin?  I could definitely be wrong...not a pharmacist or doctor.  (I actually took Midol before my dx too - didn't like the way it made me feel.)

I take Aleve for cramps, FYI.

-Shari

IT SEEMS RIGHT TO ADD BLOOD PRESSURE MEDICATION SHOULD NOT BE TAKEN WITH OUT THE CONSULTATION OF A MOYAMOYA SPECIALTIST :o
CHARL

HI!

My daughter is almost 9 years of age.--has bilateral MMD, was treated at SickKids in Toronto, Ontario,,Canada by Dr. Peter Dirks. She had 2 surgeries in 2006 and 2008. My question is about meds: She is presently on 150 mg twice daily of Tegretol (for seizures) and Aspirin 80 mg or 40 mg on alternate days.

Is anyone else on Tegretol? My daughter is Chinese--I've heard about risks--HLBA?
genetic issue? Is anyone famililar with that?

Also--I'm concerned about long term use of Tegretol and Aspirin on liver, kidney etc. EEG shows there is still some seizure activity so neurologists don't want to wean her off yet. I've asked about an alternative to Tegretol but they don't want to take the chance of changing her medication.

Generally she is doing well, though she does have some tics--usually left leg and shoulder, sometimes a vocal tic but it's transient. I understand the tics/tremors could also be a side effect of the Tegretol.

Any thoughts would be appreciated!

Thank-you

Dawn

hi my name is denise and my neurologist put me on lamictal for seizures and it is working very well I was on dilantin and it was not controlling my seizures. :)

I have a question for Gail.  My daughter is taking 15mg of Lexapro (which I see  you are saying is not a good one for MM patients).  Her doctor recently added Deplin instead of increasing the Lexapro.  Now I'm wondering if she should be taking these at all.  she started taking the Lexapro because she was on Topomax and her Neuro was concerned about depression.  any advise or warnings?