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 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.

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

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,

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

   a tea SPOON  where does "teasthingy" keep coming from??? LOL

Sorry

Very helpful, Gail.  Thanks a million!

-Shari

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

Charl here ,
Thanks everyone the information is wonderful!! Thanks Gail I never imagined we could get info from a pharmasist, Thanks so much . 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

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!

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

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.