New Here and Trying SphenoCath SPG Block

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New Here and Trying SphenoCath SPG Block

Post  migrainingmama on Fri Mar 14, 2014 9:25 pm

I'm new here and so sad to see that there are so many like me. I get migraines almost daily and am on disability. I had nrrve decompression surgery over a year ago, and it helped for a few months then stopped helping. I can't take most preventives, and Imitrex is the only abortive that helps...and that is not a great help. My migraine surgeon will be trying an spg block with SphenoCath Wednesday. My 7th round of Botox should be in a couple weeks. It feels like nothing helos and I am missing out on the fun times of my kids being little.

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Re: New Here and Trying SphenoCath SPG Block

Post  dcook60 on Sat Mar 15, 2014 4:26 pm

we are all sorry and sad that you have to be here, too, especially with little kids.  it's great that you are trying all the things your doctors have to offer.  many of us have been where you are.

i'm on my 3rd round of botox.  (45-yr history).  first: nothing.  second: cut down daily triptan use by 1/3.  third: nothing.  drat drat drat.  but keep on posting and updating us, please.  dianne
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Re: New Here and Trying SphenoCath SPG Block

Post  migrainingmama on Sat Mar 15, 2014 8:33 pm

Dianne, i have found one thing in common with all botox treatments. It stops the migraines from hitting in the middle of the night. Have you noticed that for you? Other than that, botox relief is pretty much hit and miss with it.

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YES!

Post  dcook60 on Sat Mar 15, 2014 10:07 pm

that's exactly what happened to me!  i didn't think to mention it to my neurologist.  but i have definitely noticed that effect, both the second and third rounds of botox.  (the first trial was many years ago, before any neuros had much experience with it).

my M's used to hit like a clock at 4 a.m.  now, occasionally they still do, but what the botox has done is delay them.  any little respite is a good thing, right?  i'm just disappointed that i'm taking almost as many triptans as ever.  thankfully, the shots get me through most nights more successfully.

i can still work at the age of 74, non-demanding work, mind you.  there aren't many days in a year anymore where i'm totally out of life and in bed......this is because of more than 20 years of triptans.  who know what i'd be like if they hadn't been invented.......i don't wanta think about it.  dianne
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Re: New Here and Trying SphenoCath SPG Block

Post  migrainingmama on Sun Mar 16, 2014 7:19 pm

There must be something about the delay in at least some people if we both experience it. I take 20 to 25 Imitrex a minth at this point. Have you taken that many? I have to in order to even possibly spend some time out of bed. Has your heart been ok after years of triptans? That really scares me sometimes.

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Re: New Here and Trying SphenoCath SPG Block

Post  dcook60 on Sun Mar 16, 2014 7:32 pm

i used to get 30 maxalt and 18 amerge per month. i used almost all of them, because sometimes i have to take two, two hours apart, as i used to do, long ago, with imitrex shots. (imitrex no longer works, and the pills never did). i alternate days taking the two drugs.

now that both are generic, i find that generic maxalt doesn't do diddly, and i've tried two different generic brands, so i get my brand-name supply free from the company. (one doesn't have to be ultra-poor, either).

however, they have a limit on how many they will send me, no matter how many my doctor writes the script for. they give me 18 per month. this isn't nearly enough, so i run out, and then panic. the amerge generic (one brand works) lasts longer for pain, so i get by on taking more of those.

my heart has been thoroughly checked out, and seems fine. i HATE to take this many drugs, but otherwise, i would have no life. it would pay to have your heart checked, if it hasn't been assessed already.

best of luck to you, dianne

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Re: New Here and Trying SphenoCath SPG Block

Post  Seaine on Mon Mar 17, 2014 7:29 am

How were you able to try more than one generic brand?? When I asked my pharmacy for a different generic Imitrex, they had absolutely no idea what I was talking about and looked at me as if I was spouting nonsense. "What do you mean, different kinds??" I know there are different generics since I have lived many places in the US and different areas seem to have different suppliers.

As for triptans, you should get your blood vessels checked. I'm not sure if it has an effect on the heart, but triptans cause your blood vessels to constrict. So if you have any blockages or plaque or something, you could have a stroke. My neurologist sternly told me I wasn't allowed to take more than 4 Imitrex per week due to this risk (of course I went to a different doctor after).
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Re: New Here and Trying SphenoCath SPG Block

Post  dcook60 on Mon Mar 17, 2014 8:18 am

i have no blockages, even with my excessive triptan use and advanced age.  i eat very well, as well-known author michael pollan advises.  real food, zero food-like substances.  and i always have, since i had my first child over 50 years ago.  of course, then the markets were not filled to the brim with crap as they are now........

change pharmacies; these jerks don't know what they are talking about.

it just gets me; doctors are all paranoid about triptans, which actually work for a lot of people,  because they don't have time to read the studies.  all they do is listen to what the detail men tell them.  yet, they pass out the drugs heavily advertised on tv which the ads tell us can lead to liver damage, permanent muscle weakness/palsy, and death.  "ask your doctor to give you this lethal drug".  why anyone would ask for such things is beyond belief.  dianne
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Re: New Here and Trying SphenoCath SPG Block

Post  migrainingmama on Mon Mar 17, 2014 4:08 pm

Seaine, my neuro said 4 or less is best but said due to rebound possibility. He knows nothing else helps, so we pay out of pocket for all sumatriptan above 9. Does sound like you need a better pharmacy.

Dianne, i have had my heart checked, and it has been fine so far. I am 39. I get chest pain or tightness from the imitrex, but so far it is just a side effect and not damage. It sounds like you know what does and doesn't work for your pain.

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Re: New Here and Trying SphenoCath SPG Block

Post  Seaine on Mon Mar 17, 2014 4:38 pm

Ok, actually just changed pharmacies today for an unrelated reason. New one is Walgreens across the street; hopefully they will be more helpful.

I hate it when the docs try to limit your triptans, but don't have any other help to offer. How can I take fewer triptans, when it would mean losing my job since I would miss so much work, and that's just the tip of the iceberg!

I totally agree that they try to give us so many very dangerous meds that are advertised to them. For example Neurontin, etc. that have severe side effects and usually don't even help migraines.

I have had all the blood vessels in my brain checked; I actually had to get an MRI with contrast. That was for an unrelated thing - my mother found out she has an inherited blood vessel disorder. Turns out I did not inherit it, and my blood vessels all appear normal. My cholesterol is very good too - I think that is probably a great indicator of heart/blood vessel general health. Personally I think the benefits of triptans far outweigh the risks for those of us lucky enough to respond to them.
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Re: New Here and Trying SphenoCath SPG Block

Post  Mini on Wed Mar 19, 2014 9:48 am

Seaine,
yes, it is of course quite true that some preventatives, just like triptans, had many s/effect, but it might be worth trying them all the same.

For example I have been on Neurontin for several years, and although it has some s/e I do not find them too troublesome (after initial adjustment, and finding the right dose for me). Neurontin helped me greatly in reduction of migraines, as well as the reduction of the levels of pain, when I get them, and as a result I no longer need to take as many triptans as before.

No medicine is ideal, all have s/effects, but I think it is still worth trying them when we get stuck and nothing seems to help.
Each of us reacts differently to each medication, so I am afraid in the end it is always trial and error.

I am sorry Neurontin did not work for you, and I hope that you will be able to get as many triptans as you need to help you with controlling your pain. For me also triptans are life savers.
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Re: New Here and Trying SphenoCath SPG Block

Post  migrainingmama on Wed Mar 19, 2014 1:47 pm

Just gotback from the procedure. It was quite painful, and now I'm very triggered. They said it usually takes a sleep cycle to see results. Will let you all know.

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Re: New Here and Trying SphenoCath SPG Block

Post  migrainingmama on Wed Mar 26, 2014 7:03 pm

It did not help me at all and has actually increased my pain levels since having it. Just an FYI.

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Re: New Here and Trying SphenoCath SPG Block

Post  Migrainegirl on Thu Mar 27, 2014 9:43 am

So sorry it is not working for you.  Have you seen the doctor on follow up yet?  What does he say?
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Re: New Here and Trying SphenoCath SPG Block

Post  migrainingmama on Fri Mar 28, 2014 7:45 am

I haven't seen him, but they followed up by phone since this was their first experience with this procedure. I see him mid April for an actual follow up. On to Botox #7 Monday.

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I'm new to site also...

Post  migrainesuck on Mon Mar 16, 2015 10:56 pm

I have suffered for about 20 years. I received 9-12 months of botox. I didn't respond to this treatment, in fact I felt more nauseous throughout this treatment and stopped.
I am now looking into the SphenoCath lidocaine treatment. Has anyone had this particular treatment? Please let me know how it went for you. I am desperate!


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Re: New Here and Trying SphenoCath SPG Block

Post  Sprout 87 on Tue Mar 17, 2015 7:36 am

Not sure if it is the same or not but I had a intranasal sphenopalatine ganglion nasal block & it did nothing. Hope it works better for you.

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sprout 87

Post  dcook60 on Wed Mar 18, 2015 10:11 am

in two hours, i am having the SPG block! of course, i am most distressed to read your depressing news, just before i go to the appointment with some HOPE. one has to keep hope going.....my new neuro recommended his buddy, a pain doctor, who is all excited about this nasal cannula block. i wonder if it is the same as yours, the rather-newly invented TX360 "hose up your nose", delilvering lidocaine mixed with a steroid.

can you please give us more details, such as when you had it done, by whom, and etc? thanks a bunch! dianne

(off to my treatment soon..... my migraine history is 46 years' worth, and i wonder if my nerves are just too entrenched in doing what they do, which is delivering pain??)
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Re: New Here and Trying SphenoCath SPG Block

Post  Sprout 87 on Wed Mar 18, 2015 1:21 pm

dcook60
Didn't see this until after you have had your procedure. Sorry. Mine was done the 1st week of Jan. by a pain management doctor. It was more like a long Q-tip dipped in lidocaine & inserted through the nose then left there for 20-30 minutes. The doctor had scheduled another procedure where in the medication was injected through the cheek & up into the nasal cavity. Weird twist of events because he left the practice abruptly before this was done. His replacement "wasn't interested in doing that" so I never got it done. Hopefully yours worked for you. Everyone is do different that what doesn't work for one person will work for the next.

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Re: New Here and Trying SphenoCath SPG Block

Post  dcook60 on Thu Mar 19, 2015 8:40 am

the SPG block was a big fat failure for me.  i had it yesterday at 1 p.m., the procedure newly invented where a soft rubber hose is threaded up one's nose, til it hits the skull bone.  (not as gross as it sounds).  then the lidocaine mixed with a steroid is shot up there and it anesthetizes the ganglion, which is an area where many nerves converge at the back of the sinuses.

the procedure itself wasn't anything to worry about.  i'd be much more worried about a huge needle through my face.  but alas, it didn't work.  in fact, i came home feeling most terrible, and could do nothing but lie on the couch for the rest of the day.  i went to bed at 8 p.m., but couldn't go to sleep for four or more hours, because of the escalating pain.

today i am going to work, and still feel hideous.  but then, i am very used to feeling hideous; just not this bad, usually.  i am just praying that this isn't my new "normal".  the pain moved around in my head yesterday and last night, and now it is concentrated in my nose/nasal passages, plus neck and mastoid area in back of ears.  great, eh?!

obviously my nerves are very ANGRY at being disturbed.  the doctor said, afterwards as we were discussing my lack of success, that since my migraines are all mixed up with sinus infections and bad drainage, in spite of 3 surgeries there, that this method works wonders on pure migraine.....he surmises i have too much else going on.  BUT IT WAS WORTH A TRY!  i will post more on subsequent days.

dianne the guinea pig
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Re: New Here and Trying SphenoCath SPG Block

Post  Migrainegirl on Thu Mar 19, 2015 6:45 pm

Diane,
So sorry to hear it was disappointing. Any chance it will get better as things "settle down"?
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Re: New Here and Trying SphenoCath SPG Block

Post  dcook60 on Fri Mar 20, 2015 4:38 pm

it's now 48 hours since the SPG block.  yesterday afternoon (after about 26 hours) i started to feel a little better than the hours after the deed was done.  today i feel as good as i ever feel (which isn't all THAT good!)

i had been afraid that the pain was my "new normal".  one cannot help thinking like that, especially when reading that others have had the experience of escalating pain.

if i go a few more days with less pain, then i will hope to conclude that the block did something.  but the lovely pain doc who worked on me seemed to think a person should be able to tell almost instantly that the pain would go way down.  since i react to almost everything ever tried in a contrary manner, getting worse at first isn't that unusual for me.

i will update again in a few days.  maybe my news is not ALL BAD......we shall see.  dianne
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