Hello all! I'm a very frequent reader of these boards, but haven't posted in an extremely long time. As of yesterday, I'm two years post crainiotomy/ RMCA clipping. I've been receiving Botox injections every 90 days since September 2013. Due to insurance I have to quit receiving the injections. I've gone from having 25 Migraine Days a month to about 16 since starting Botox. I'm very concerned that my migraines are going to increase again; Botox is just simply not within our budget. I've tried Neurontin, Verapamil, Acupuncture, Crainiosacral Massage, Chiropractic care, exercise, and a variety of supplements (some of which I still take) without much improvement. When I started the Botox I was in a very deep depressive state (all new to me after having clipping). Since November of 2014, so about 4-5 months, I'm FINALLY feeling much more like myself again (although I am on two antidepressants, a mood stabilizer and a benzodiazepam for anxiety). I guess what I'm wondering is since depression and pain go hand in hand do you think my migraines will again worsen even though I'm not depressed now? I already experience incapacitating migraines an average of 4 times a week and I'm so afraid to go back to 25 or so a month.
Sorry this is so long. Just wanted to give as much info as possible.
Cordie, thank you for posting, and it will be helpful to other members to know what you have tried. It is always hard to answer prediction questions ("what do you think will happen?"), as every member's experience is different, but I hope very much that your headaches remain under control. We have a migraines subgroup that might offer some additional tips for you. Just click on "Groups" to join it. All the best to you!
I just want you to know tha you are not alone. Since my surgery in 2012, I have been through these horrible cluster headache three times a day. I know how you feel. I tried everything but in my case has been unsuccessful. I think that in someway doctors need to find why we developed these headaches in order to find the cure. I hope that we find it someday with God help. Anyway, I think you talk with manufacturer of Botox to see if they can help you with the cost.
My wife's Neurologist tried his best to get my wife to try Botox, she resisted and thankfully so. She had a similar number of monthly migraines and it was expensive enough with the migraine medications such as Maxalt and Zofran.
Since starting EEG Neurofeedback ( which is akin to fighting fire with fire) her episodes have dramatically reduced and it is all due to EEG based Neurofeedback. This is a different kind of treatment that isn't discussed much anywhere. If you are willing to try it you will find that it is covered under US based health insurance programs under the mental health component of health insurance. My wife gets two one hour treatments each week and she has no limitations of how many she can get this coverage year.
Everyone would like a pill or injection to cure everything but some things need to be done in a round about non-traditional way. After watching my wife suffer for 18 years from these excruciating migraines she is finally getting a somewhat normal life back and it's so gratifying for me to see this happen.
I feel your pain, and pray for a quick resolution. I have had headaches for the last 41/2 yrs since my clipping. I have tried many failed meds and even Botox. I was so very tired of feeling this way, going through life trying to pretend all was well and oh so grateful to be alive, when all I wanted to do was crawl into a ball and die. I just wanted to be put out of my misery, was so tired of hearing oh your such a trooper… Your so lucky… When all I was thinking was yeah right, shoot me now! I finally went to a different Neuro who thought out of the box and sent me to go get nerve blocker shots. What a difference in my quality of live. I have most of it back now. The daily headaches are gone; I get them from time to time; but not like they used to be. Now I think to myself, yeah ya know I am pretty lucky to be alive. No more daily meds only an occasional excederine… What a difference. Maybe you should ask your Dr about nerve blocker shots. Good luck and keep us posted
Dancermom,
Thanks for the suggestions of other groups - I appreciate it very much! I know it’s hard to predict anything, actually impossible. I guess I worded my question inappropriately. I’m just looking for other people’s experiences.
Thanks again-
Cordie
Vanessa-
Thanks for the idea of contacting Botox directly. I had a pharmaceutical friend suggest just that yesterday. Thanks also for the encouragement- it’s nice to know I’m not alone ( and I ALWAYS) feel that way coming here!
Take care-
Cordie
Ed,
Thanks for your reply, I’m glad to hear your wife is having good results with eeg neuro feedback. My neurologist has discussed this, but said you have to have quiet and still to focus and practice and make it effective. Is that true? Because I have two small kids- a 4 y/o and a 2 y/o- and quiet just isn’t realistic. I don’t just want a shot or a pill to work, I’ve tried a LOT of things and am willing to do whatever I can to have a better quality of life! I’ll defon look more into the neurofeedback. Thank you-
Cordie
Jo- Anne,
I’m so sorry you went through pain for so long. Mine has only been two years but I can relate. I’m not proud to admit, but I even ended up in a psych ward because the pain/ depression was so bad I didn’t know what else to do.
So, where do they put this nerve block? I don’t have another appointment with my neurologist until May 4th and I want to talk to her about it. Who does the nerve block? How long does it last? Does insurance cover it?
Thanks so much-
Cordie
My neuro sent me, I forget what dr administered the shots.(I forget a lot of things lately) There were like 4 shots on either side of the base of my head. It has been about 8 months since I recd the shots and yes my insurance did cover it. They say sometimes just the 1 time will resolve it if not you may go back for more. So far I am very please with the 1 round. The injection site hurt for about a wk after, but now I am fine. I am not one for taking pills and don’t like the way they make me feel. Chronic pain is no laughing matter, definitely take a tole on any one. I know it did me! May 4th seem like a long time away when your in such pain. I would call the drs office and leave the question for them to get back to you with or see if you can get in sooner. I wish you all the best in finding your "new normal"
Where you are comfortable. Please keep me posted
Sorry to say this but your Neurologist seems to be misinformed. You don't have to do any of the adjectives the Neurologist described. EEG Neurofeedback is akin to a heart lung bypass machine during heart surgery. You, the EEG patient, do nothing except close your eyes and let your subconscious brain take over with the assist of the EEG programming. The procedure is very challenging to describe because it is so innocuous to the patient. The treatment plan is developed by a certified Ph.D. medical professional. This is not something that is done in your home. The first session is a brain mapping protocol to determine the best approach to treatment. All subsequent treatments are usually about one hour about 1/2 of which you are hooked up to wire leads placed on the head. During the treatment you will close you eyes (and this doesn't seem to be something you will consciously try to fight against because your subconscious brain will find it to be like getting a fantastic massage.) You will be in control and aware of what is going on around you but you will want to stay in the state in which you are. Each treatment segment of which there are usually four (each approx. 6-8 minutes long) is done on a rotating basis over the number of treatments you and your Doctor agree to. As of this date my wife has had over 100 treatment sessions and she will go through the rest of this year twice per week. If this wasn't helping her so much we wouldn't invest the time because for us it takes about four hours out of our day because we must travel to get to the treatment location.
I bring this information to this groups attention because there are so few effective treatments for post aneurysm migraines and headaches, and you all know what this means to your personal and families lives.
Ed
cordie said:
Ed, Thanks for your reply, I'm glad to hear your wife is having good results with eeg neuro feedback. My neurologist has discussed this, but said you have to have quiet and still to focus and practice and make it effective. Is that true? Because I have two small kids- a 4 y/o and a 2 y/o- and quiet just isn't realistic. I don't just want a shot or a pill to work, I've tried a LOT of things and am willing to do whatever I can to have a better quality of life! I'll defon look more into the neurofeedback. Thank you- Cordie
Jo-Anne,
Thank you for the information and for understanding that chronic pain is horrific. I am doing my best to find and enjoy my new normal- it’s been such a process! Thank you for your kind words. I wish you all the best!
Ed,
Wow! What a wealth of information! Thank you so much for taking time to share such an incredible amount of detail with us. I truly appreciate it.
You’re amazingly devoted to your wife and her recovery ( such a refreshing thing to see!)
I will speak to my neurologist about the neurofeedback. It seems like a fantastic option. Will have to see if they do it anywhere near where we live.
Thanks again for your help!
Sincerely,
Cordie
Cordie, I had a Sphenopalentine Ganglia Block or SPG Block back in December. The Doctor performed the procedure at our local hospital and used a type of syringe to inject lidocaine. This was after my Neurologist tried various medications to control the headaches and a tremor. I rarely get headaches now. I can have the procedure every three months if needed. I haven’t needed another one yet. I still get headaches but normal, allergy headaches, once in awhile I get a bad one, but nothing I can’t control and they don’t last long. Usually I have overdone it.
Also I went to webmd and found this - http://www.webmd.com/depression/managing-pain
I hope you are working with a good therapist. In my opinion, the webmd article addresses the need for what a therapist should be like. Have you kept a migraine journal? Are there foods, activities, sounds, light that set them off?
And as hard as it sounds, one has to really believe the treatment will work. I believe it makes your neurons start firing in a different manner when we are looking at life in a more positive way. Remember you are in control of your life, not the pain nor the depression control you. Sometimes I look at it this way, I am in a war for my life, the way I want to live it, I will not be defeated. Yes I may have lost a battle yesterday or a skirmish the day before, but I learned, I adjusted and I will conquer this day.
Moltroub,
Thank you so much for taking time to respond. I appreciate the article from web MD. It was a good reminder of so many points I tend to overlook. Yes, I keep a headache diary- it is frustrating at times because there isn’t often an obvious “cause” of my headaches.
Thank you for your positive words. I agree that one must believe a treatment is going to be effective for it to be so. Since my depression is under control at the time I have taken a break from therapy. Tears of therapy become exhausting. Perhaps I should revisit the idea as a way to cope with chronic pain. Good idea, thank you!
I’m so happy to hear the block is working out do well for you. I pray it continues to do its job
Thanks again!
We to kept a headache diary and it to did not provide much information in the beginning. However over time we began to expand the time frame and then look outside the box so to speak (discounting food, odors, medications, etc., and that's when we began correlating weather and electrical devices as the trigger for my wife's migraines. It was difficult and time consuming but eventually the true trigger reveals itself with the Ahaa moment. From that point we were able to replicate and correlate the triggers over and over again with the same outcome each time. Hope this helps get you thinking.
