My experience with Botox has definitely been a good one. I have benefited greatly from it, with both my chronic migraines and chronic daily headaches (it helps with the tension in my shoulders and neck, and with my TMJ). I do still get migraines and daily headaches, (the daily headaches which are from my P.O.T.S.). The difference is, now when I get a migraine I can continue with what I am doing, they don't immobilize me like they used to, and they don't come as frequent. I first started getting Botox back in 2010, since then I go once every 3 months (4 times a year). The whole procedure takes about 15 minutes, most of the time is prep, all the shots go pretty quick. And yes it is a little painful getting them. When it gets injected into my muscles, I can feel the liquid going in (and sometimes hear it) and it burns! It goes away after about 5 seconds, and its nothing like a migraine so its bearable.
Immediately after Botox I get pretty sore, and after about an hour I get sleepy. When I go to bed that night I find it hard to find a comfortable position because of the soreness and the location of the injection spots. That can last anywhere from 4 nights to about 2 weeks. Within 2 days, I'll start feeling like I have the flu which can last me 3-12 days, coming and going. I also get worsening of both my headaches and migraines, which slowly improve over the next 2 weeks to a month. I do get darkening around my eyes as well, that goes away in about 3 weeks, (that is why I love me some concealer). That's about it for negative side effects on me, other than not being able to move my forehead (or my eyebrows, they can stay where they are) but to me that's a positive. It can take my Botox anywhere from 2 weeks to a month for me to feel any change with my migraines. And it usually lasts for 2 to 2 and a half months after it starts working. But it isn't always the same outcome. Sometimes it works sooner, sometimes it lasts longer, it just depends, (and for some lucky people you only need 1 set of injections and it knocks your migraines out completely).
People always ask me the same questions once I've told them I get Botox for my migraines (don't take it the wrong way, I don't mind when people ask me questions, I actually appreciate it). The first question everyone asks me is, "does Botox really work?". Well you already know the answer to that one. The second question I get is, "where do they inject you?". Now that one takes a little more time to answer. I can't say I know 100% where they are all injected, (since it all goes pretty quick and since I can't turn my head like an owl) but I do have a good idea.
As you can see I am not an artist when it comes to drawing. But you can get an idea of where they are all injected. I get 22 injections total, but that does differ depending on the doctor.
As long as I'm talking about my experience with Botox, I thought I might share some tips. First and foremost, I think it would probably be a good idea (if you're getting Botox for the first time) to take someone along with you. Not only if you have a reaction but if you need someone to step in and help you, (I actually need someone to drive me back after). The doctors say you can continue with your day without a problem but its better to be safe than sorry. Secondly, you want to wear loose fitting clothes or something comfy, at least on the top half of your body, (ladies, be careful with those lovely bras too) the last thing you want is something putting pressure on your injection spots. You can ice the spots afterwards but the ice can act like a brake petal for the Botox, (says my Botox doctors). So what I like to do is ice it for 10 seconds and then take if off for about a minute, and I'll repeat this a few times. The last tip I have is, be patient! It takes some time for Botox to kick in and start blocking your nerve endings. When I got my Botox for the first time it didn't really help that much, but by my third set of injections I could definitely feel it helping. If it doesn't help right away, don't freak or write it off, give it a little time. And it does differ from appointment to appointment. So for those of you trying Botox for your headaches and or migraines (or for those of you who already get Botox) I wish you good luck and better migraine days!
When you have a chronic illness you've more than likely had your fair share of visits to ER, and you've more than likely ended up with a not-so-nice doctor. When I've gone into ER for a migraine I've been told that I was there because I was trying to get out of school (it wasn't until I threw up all over that they kinda started to believed me). And even now with P.O.T.S., I still get laughed and snickered at by ER doctors (or doctors in general), that I "don't really have a heart problem and I shouldn't worry". I can't began to count how many times I've been told that it "was all in my head" or it "was anxiety". I also can't began to count how many times I've been treated down right mean by a doctor or ER staff. My family didn't believe me until one of them came with me and saw how some of these "professionals" act. It's especially annoying because I know what I need when I have a P.O.T.S. flare-up. All I need is a bag of IV fluids, but apparently to some ER doctors it's like asking for a new blue ribbon pony.
So my friend found this funny little video about real experiences with doctors/ER staff. BE WARNED IT DOES HAVE SOME BAD LANGUAGE.
https://www.youtube.com/watch?v=lg7YvKousDM
Do you think people would have more understanding and compassion for migraines if they experienced one, or would it depend on the person?
Wake up, dizzy again..."fun, this is going to be a great day" I think to myself. Walk to the bathroom lightheaded. Stumble my way into the kitchen...grab something quick and healthy. Shovel it down so I can take my salt tab. So I can start my big mission for the day...building fluids.
Unfortunately, this is very familiar to people who suffer from P.O.T.S. (Postural Orthostatic Tachycardia Syndrome). And this is just the tip of the iceberg. A lot of the time people don't take this condition serious. Even though it causes a long laundry list of symptoms, from sever to minor (I realize there are worse conditions out there, and thank the lord that I don't have any of them, yet). I really wanted to sit down and write what it's really like living with P.O.T.S. but I found it extremely difficult. I just couldn't do it justice, so instead I thought I'd just give a brief description.
Living with P.O.T.S. can be very difficult, it's like being trapped in your own body unable to really control it. And that is very scary to me, and probably to most people. It feels like your body is an airplane and the captain and co-pilot left the cockpit and left the plane on automatic pilot. Which makes simple daily activities nearly impossible at times, (you do have your good days and your bad days), not being able to shop at a store, or get together with friends and family. It definitely has affected the social aspect of my life, but thanks to a few people who have stuck by my side, have accepted me. Since you don't have obvious signs of a problem people don't take you serious. The symptoms I have the most problems with would be, dizziness; lightheaded-ness; mental fog; memory issues; feeling like I am going to pass out; and weakness, (might I add all the peeing I do! I feel like I should go into the toilet paper business!). (It's almost worse than having migraines). I have yet to find a helpful medication, (having only tried one; stated in my last post "new year, new med, new me"). I am hopeful that I will find something that will help me with symptoms, since there is yet to be a cure for P.O.T.S. I take one day at a time, and focus on the positives.
Do you think migraines should be considered a disability?
At the beginning of December I was put on a new medication for my P.O.T.S. and I am pleased to announce that so far it's helping!
Being on the botox, keeping my iron and vitamin D levels up, and doing a workout routine that helps my core, back and neck (not like a hardcore workout, but one that gets me moving and helps me not to lose muscles). This has helped a lot with the chronic migraines but as far as the daily headaches I couldn't find really anything that helped. But I did notice that when my P.O.T.S. was better, my headaches were better. So when it was time to see my neurologist, I mentioned it to him. "It's not so much the migraines that are keeping me from doing things, the botox has helped with that. But now it's the P.O.T.S. that's keeping me from participating in life". He decided to put me on another form of salt tablet, in addition to my current salt tab (thermotabs). It's called "Fludrocortisone", It is a form of steroid. It is helping me be able to do more things, like be out in public without feeling like I'm going to pass out, but I still have my good days and bad days. I do still have hope that one day, soon, I'll be able to do everything I want to do without the chain and ball of migraines or headaches or the symptoms of P.O.T.S. For those of you still out there struggling, don't give up! Good things are coming your way, just remember, it takes a little poop in order to grow beautiful flowers, (as our dear friend kandee Johnson would say).
I know I've talked about a few different types of headaches in the past but I wanted to put together a list and brief description of different types of headaches that I've come across (through the web and in books).
- Acute/Cough/Cold Headaches= are from respiratory or sinus colds, exertion from coughing or blowing your nose.
- Caffeine Headaches= come from caffeine withdraw or from drinking too much caffeine.
- Chronic Headaches= are categorized as a constant continuous headache that usually recur daily.
- Chronic Progressive Headaches= are described as inflammatory headaches that get worse and happen more often over time, (is also one of the least common types of headaches).
- Cluster Headaches= are described as a severe pain located behind an eye or in the eye region without changing sides. They can occur one to three times per day during the "cluster" period, which can last up to two weeks to three months.
- Exertion Headaches= come from too much physical activity.
- Hangover/Dehydration Headaches= stem from not having enough fluids in your body. You also can get headaches/ migraines from the chemicals in alcohol.
- Hormone/Menstrual/Pregnancy Headaches= come from changes in the hormone levels, (menstruation, pregnancy, menopause).
- Hypertension Headaches= are due to high blood pressure, this happens when your blood pressure is elevated.
- Meningitis/Encephalitis Headaches= in meningitis, the membranes that cover the brain and spinal cord become swollen or inflamed. And in encephalitis, inflammation of the brain caused by viral infection, thus causing headaches.
- Post Traumatic Headaches= are from an injury/injuries to the neck and or head (like a concussion).
- Rebound Headaches= come from changes in medications, or from caffeine.
- Sinus Headaches= are described as pain in the cheekbones, forehead, and bridge of the nose, worse when bending over.
- Spinal Headaches= are headaches that develop after a spinal tap, about thirty percent of patients end up with one, the headaches are due to spinal leakage (worsening pain when sitting up).
- Tension Headaches= are one of the most common types of headaches, there are two types; Episodic and Chronic. Episodic, occur less then fifteen days per month, the pain is mild to moderate. band-like effect, pain is in the front, top or sides of the head. Begins gradually often occurs in midday and may last thirty minutes to several days. Chronic, may vary in intensity throughout the day but almost always is present. Also in the front, top, or sides of the head. And they come and go over a prolonged period of time.
- Tumors/Organic Headaches= are an abnormality in the brain or skull (Benigh or Malignant brain tumors, brain aneurysm, hematoma, brain abscess, brain infection, cerebral hemorrarige). These are less than five percent of all headaches. Symptoms that could be a red flag, a sudden sharp, intense or severe pain (especially if you never or only occasionally have headaches), sudden lack of balance or falling, confusion, inappropriate behavior, seizures, or difficulty speaking.
Note that I am not a medical doctor, and if you have concerns about your headaches it's always best to get a professionals' opinion.
