New CH.com Forum

Duck Goes Quack

CH.com Newbie

Offline

I Love CH.com!

Posts: 3

Ajovy
Dec 5^th, 2019 at 11:43am

I was just given my first Ajovy injection yesterday. I was told by my Dr there are no side effects. Then I get home and start reading and the side effects are pretty terrifying to me.

I started on Topamax when they first started happening which caused massive hair loss as well as memory loss.

Then I was given 9 Imitrex/month (all my insurance will pay for) which helps a small bit if I take it in time.

Then I was switched to Trokendi/Imitrex and gained nearly 60lbs and was still having CHs every few days.

Now I am being put on a combination of Ajovy and Trokendi.

NOW I am reading it can cause hair loss, weight gain, bleeding, etc. Granted this was from people's personal experience. All the literature I've read does not have these listed.

And I keep having like "false" headaches. My eye will start watering and drooping but the headache does not come. This happened all night until like 7am.

Back to top

IP Logged

AussieBrian

CH.com Hall of Famer

Offline

CH - It's all in your
head!

Posts: 3851
Cairns, Qld, Australia
Gender: male

Re: Ajovy
Reply #1 - Dec 6^th, 2019 at 3:44am

G'day Duck, welcome, and you sound like so many of us who have been treated as guinea pigs by medical professionals who know so little about the nightmare we endure. I can promise the most important part of this journey is finding a headache specialist who actually understands Cluster Headaches, but that in itself can seem an insurmountable task.

I'm guessing by your post that the Imitrex you were prescribed is the pills which we've found aren't much use because they take so long to start working. Excellent for migraine, which is what they're made for, but we need something much more fast-acting which is why the injectable Imitrex is vastly preferred. We can even offer tips on how to get two or even three doses out of a single jab.

Haven't heard previously about Ajovy so I googled "ajovy cluster headaches" and you may care to the same.

Has anyone mentioned Oxygen Therapy to you? It's sensationally popular among CHeads as a first line of defence and there's a link to our Oxygen Info page just to the left of your computer screen.

As you read around our little forum here you'll see references to some preventative therapies that are proving wonderful for many people so there is hope.

There is always hope.

Again, the most important thing about the whole mess of Cluster Headaches is getting a confirmed diagnosis from someone able to do so then working out a plan of attack in order to regain your life and we're happy to help you every inch of the way because we care.

All headaches are horrible,

Brian down under.

Back to top

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

IP Logged

Duck Goes Quack

CH.com Newbie

Offline

I Love CH.com!

Posts: 3

Re: Ajovy
Reply #2 - Dec 8^th, 2019 at 11:52am

AussieBrian wrote on Dec 6^th, 2019 at 3:44am:

G'day Duck, welcome, and you sound like so many of us who have been treated as guinea pigs by medical professionals who know so little about the nightmare we endure. I can promise the most important part of this journey is finding a headache specialist who actually understands Cluster Headaches, but that in itself can seem an insurmountable task.

I'm guessing by your post that the Imitrex you were prescribed is the pills which we've found aren't much use because they take so long to start working. Excellent for migraine, which is what they're made for, but we need something much more fast-acting which is why the injectable Imitrex is vastly preferred. We can even offer tips on how to get two or even three doses out of a single jab.

Haven't heard previously about Ajovy so I googled "ajovy cluster headaches" and you may care to the same.

Has anyone mentioned Oxygen Therapy to you? It's sensationally popular among CHeads as a first line of defence and there's a link to our Oxygen Info page just to the left of your computer screen.

As you read around our little forum here you'll see references to some preventative therapies that are proving wonderful for many people so there is hope.

There is always hope.

Again, the most important thing about the whole mess of Cluster Headaches is getting a confirmed diagnosis from someone able to do so then working out a plan of attack in order to regain your life and we're happy to help you every inch of the way because we care.

All headaches are horrible,

Brian down under.

I have been unable to find a headache specialist within reasonable driving distance to where I live. My Dr keeps sending me to the same neuro that looks at me like I'm insane because "women can't have cluster headaches" Roll Eyes

The Imitrex is in pill form. My insurance will only cover the pill form and only 9/month.

I read about Teva trashing Avjoy as a CH treatment. How do I go about getting my Dr to listen to me instead of acting like it is the holy grail?

I attempted to get oxygen therapy but again small town = small town Dr's that know you don't have many options but to go to them.

My Dr.'s seem to be under the impression that because I am female that it is impossible that I suffer from cluster headaches even though they have witnessed more than one in person.

As for the Avjoy they claim there are no side effects. But ever since the injection I feel like I have ADD! I can't concentrate on literally anything. It's ridiculous.

Back to top

IP Logged

AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Ajovy Reply #3 - Dec 8^th, 2019 at 6:52pm It's shocking that such myths occur in this day and age. Can you take the literature into the doctor and say, "Read this. Women do get Clusters!"? Can you go to a doctor in another town perhaps? As if CH isn't bad enough we have to battle the ignorance of the medical bureaucracy as well!
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: Ajovy Reply #4 - Dec 11^th, 2019 at 3:57pm Duck, At least get your Doc to prescribe the 100 mg pills so you can cut them in half and make them last twice as long.
Back to top	Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron. "SHUT UP HUB!" IP Logged

Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Ajovy Reply #5 - Dec 12^th, 2019 at 11:24pm Ajovy doesn't have a good record in treating CH's, but this one does. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or WsXHK_zXvkNrfAhFV8krR2XaXJ6v28aEJ9LI Cheers Hoppy
Back to top	IP Logged

Duck Goes Quack

CH.com Newbie

Offline

I Love CH.com!

Posts: 3

Re: Ajovy
Reply #6 - Jan 26^th, 2020 at 9:11pm

Sorry for the late update. I forgot my password and then got busy. Lol.

I would seek out another Dr if they weren't so far away from where I live. The closest is over 2 hours away. My regular Dr says a new Neuro is coming to our town so hopefully they don't look at me like I'm insane. I even took a video of the beginnings of a CH and my current Neuro brushed me off.

When I say my insurance won't pay for Imitrex they will ONLY pay for 9/month and it is the 100mg.

But I was FINALLY approved for Emgality and had my first injection. So far it is working. I haven't had a CH in a week or so *knock on wood* I usually have 2-3/day.

Back to top

IP Logged

AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Ajovy Reply #7 - Jan 26^th, 2020 at 9:40pm Keep fighting, Duck. Just keep fighting! We're behind you all the way.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

Mjedwards409 CH.com Junior Offline I Love CH.com! Posts: 58	Re: Ajovy Reply #8 - Feb 3^rd, 2020 at 8:15pm As a husband with a wife that’s a sufferer, the “women can’t get CH” thing makes me furious. She went 2 full blown cycles in pain before we found another neuro, no matter what it took. I know it’s easier said than done, but a 2 hour drive to find potential relief is well worth it in my opinion. Wishing you PF days soon!
Back to top	IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!